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Tuesday, October 28, 2014 7:24 PM CDT I know it has been a long time since I have updated Marissa's caringbridge site. Not an easy task, especially in Sept and in December. Marissa would have turned 19 on the 19th of last month. Her GOLDEN Birthday. It has been HARD, really hard. Rarely does anyone leave a message anymore, especially hard when those who knew and loved her, never stop by to leave a note that they are thinking of her or us. We miss her every single day and we always will.
The last 11+ years have been extremely difficult for our family. We were persecuted by people that we trusted and loved dearly. We are still in recovery mode and fear we will never really recover all that we lost. If people only knew what all we have been through, emotionally, financially and medically. We moved to a new state 5 years ago, hoping for a new start and healing that we so desperately need/needed, as we had poured ourselves into helping others adopt, as we felt that is what our precious Marissa would have wanted, but unfortunately, we did not take time to properly grieve or to help our other children grieve. We crashed and crashed hard, at least I did. I had to quit work, my health was suffering and our children were suffering. We thought people would be more understanding, but then the attacks came, when we did quit so we could devote our time to our other children and to each other and they were relentless to destroy us and we had done nothing wrong. Those that TRULY know us, know this is true. We poured our lives, hearts and our own personal finances into helping others adopt. Helping children find forever families of their own. We have proof of all we gave, but they still wanted to crucify us over their lies. It hurt us deeply to the core of our being. I have forgiven them through prayer, but that does not change our current situation. We need a break so badly. We had a bit of a break last month and were finally able to replace our HVAC unit, that has not worked in over 2 1/2 years, yes, no heat or A/C on our main level. We have been surviving with space heaters and fans until last week, we were finally able to replace our main floor unit. So many other things need to be fixed or replaced in this house we live in, so many that it seems we will never "catch up", or truly have a functional house to live in. My 90 year old mother in law now lives with us full time. We have a beautiful 8 month old grandson and a Granddaughter due in early December, such blessings, in these difficult times. Still nothing will ever be the same without our beautiful Marissa Faith. We miss her every single day. Everything changed when God called her HOME. Please pray for our family, we need financial and emotional healing, would be very healing to have those that chose to hurt us, to ask for forgiveness, but it will probably never happen. So tired from it all. No cures still for Marissa's cancer, and children still keep dying an agonizing death in front of their parents and loved ones and it is so torturous that we will never forget how much our sweet girl suffered and how she was trapped in a body she had no control over anymore. I hate cancer so much and hate that it has changed us forever. Blessed to have our other children doing well and for our grandchildren, such glimmers of HOPE that things WILL get better. Please continue to pray for us, especially for our children. Blessings, Kim
Monday, September 16, 2013 9:13 AM CDT As we approach Marissa's Birthday, what would have been her 18th, we also approach the 10th year since she was called home. It's been an especially hard year. Lots of tears, lots of memories, still miss her like it was yesterday. The pain of losing a child, is that hardest thing you can go through,
We are changed forever, she took a big part of our hearts with her. TIME DOES NOT heal all wounds, or lesson the pain. I wish people could understand, but at the same time, this is a journey/pain, you don't want anyone to EVER understand.
Facebook is being flooded with my thoughts and tears. Hard to stop the tears this year, praying for strength to get through Jalin's 10th Birthday and Marissa's 10 years in heaven, without tears, for Jalin's sake. If I can just get through the day Friday and let it out Friday night after Jalin has gone to bed.
Life has not been good the last few years, we have had several bumps in the road and the road isn't getting any smoother either. I long for a vacation with ALL of our children, something we have NEVER done, not even a Make-A-
Wish trip before she was called home and now with 3 more children and them all growing up so fast, I wish so much we could do something all together,before it is too late and we understand "TOO LATE", regrets, etc, but the funds are never there, with our large family and medical bills, seems we get one thing paid off and are hit with another medical bill in the thousands, or a home repair bill, or car repairs, it never ends. Could certainly use a break financially. Still we count our blessings, and push forward in FAITH to get through each day. Life is precious and it slips away all too soon.
From my FACEBOOK post today:
I never knew you could love someone so much. If I only knew our time together would be so short. Still hurts like it was yesterday and this year is especially hard. Flooded with tears and aching to hold her in my arms again. Cherish every single moment, every milestone, every hug, smile, laugh, every cheesy gift brought home from school, the sleepovers, the birthdays, everything. For none of us are guaranteed a tomorrow. Never take anything for granted. Wish I could take a vacation to heaven, if only for a moment. Praying that FAITH will sustain me until I SEE her again. Miss her more than there are words to explain.
"I have been crucified with Christ, nevertheless, I live, yet not I but Christ in me and the life I now live in the flesh I live by the FAITH of the SON of GOD who loved me and gave HIMSELF for me." Galatians 2:20 This is our HOPE that we will SEE her again. We hold onto our Faith, or there would be no HOPE.
Wednesday, January 18, 2012 6:41 PM CST I know it's been a long time since we've updated our page, but it's truly been a stressful last couple of years, especially this last year. Tonight I needed to write, as a very special little boy with an amazingly beautiful smile, is about to earn his wings, so I had to write to stop the tears.
Early Spring of 2011 brought yet another cancer scare to our family, this time for Steve, as well as a heart scare. It took several months to get all the tests scheduled and results back, but thankfully, all was ok! A HUGE RELIEF, but it was very hard waiting for the results for so long., especially since the doctor was convinced it was positive.
The day after Steve's biopsy, I ended up in the ER with stroke symptoms, that were later determined to be brought on by a complex migraine. They put me on a migraine preventative medication and unfortunately, I had a very bad reaction and didn't know it was a reaction for several months. We just thought it was my FM going out of control and progressively worse. Thankfully, I had finally had enough of the side affects and called my doctor and told them what was happening and they took me off the meds immediately. It took several weeks to get it all out of my system and back to feeling almost normal again, but I may have some nerve damage from being on the meds so long with the reaction it caused, as I'm still having some of the same symptoms, but am greatly improved. Instead of the meds I was on, they decided to increase one of my other FM meds and it has made me gain so much weight, it's not even funny, but at least I can walk, something I almost couldn't do at all, before they took me off the other drug. Hoping to get the weight off one way or another. Enough about me.
The kids area all doing pretty well, we are still homeschooling this year, but praying about sending Grace to private school next year for HIGH SCHOOL, as she will be a freshman next year. (HOW DID THAT HAPPEN SO FAST????) Just not sure how we can do it financially and public school here is not an option for our children. The schools are ranked around 48th in the country, and our 1st year here was not pretty in public school. IEP's weren't being followed and someone was always getting off the bus in tears from being bullied about their race, or something else and the schools had zero common sense. The kids were not really learning much of anything. We would love to have them all in public school, but with all our losses and moves, we simply cannot afford what would amount to another mortgage payment every month, to send them all, so we ask for HIS will if they are all to return to private school.
So hard to learn of more children earning their wings from brain tumors. A little boy from our church is close to his journey HOME tonight. We ask for prayers for his wonderful family and all those that know this brave little warrior. We pray that his family will never feel alone or abandoned, as we did for so long after we had to say good-bye to our sweet, beautiful Marissa Faith.
Marissa, I know you will be there to greet Clinton when he comes HOME, and show him around, pray to God that his family knows they are never alone on the journey that lies ahead for them, here without their beautiful little boy. ASk God to let them know clearly that they WILL SEE Clinton again and to hold onto that until they hold him in their arms again. It's taken us a long time to really KNOW that God did not abandon us when HE called you HOME.
I do not wish that feeling of loss, dread, alone/abandonment feeling on anyone. It hasn't been easy.
We are so thankful for our church. The love we feel at St. Edward has been so refreshing and healing, something we had been trying to find, but couldn't, for so long until we moved here. So thankful to know that Clinton's family has had amazing support through this side of his journey with cancer from our church family and even more thankful to know that they will be there for them for the rest of the journey as well. Our church family is truly AMAZING, no matter what anyone might say differently.
Steve and I are looking forward to being a part of their healing ministry and we pray that GOD will USE US to help other families faced with terminal illnesses with their children, to make a real difference to them. We pray that HE will give us the right words to use to give them HOPE, to ground them in FAITH, to give them PEACE and COMFORT on this journey of cancer, no family ever wants to be on. I truly believe this will be another step in our own healing process. The process of healing we know now, will never END this side of heaven, but we are finding some GRACE, PEACE & COMFORT for the first time since we had to say good-bye and we feel we are drawing closer and closer to HIM again because of our church and the deep love we feel there.
We aren't feeling so alone on the rest of our journey any longer, though the tears still flow some days, we know that they always will, we feel HIM with us, holding our hands & wiping our tears, showing us some light at the end of the tunnel. It will be it's brightest, when HE calls us HOME, one day when
HE says we are ready and we KNOW our sweet angel will be with HIM leading us into the light. That will truly be a GLORIOUS DAY! I cannot wait to hold Marissa in my arms again & I know Steve feels the same way.
OH, I pray that HE uses us well for the rest of our journey & that we hear him clearly and obey whatever He wants us to do. Let the pain we have experienced, spare someone else a part of that pain. Let our pain be used for something good for someone else.
I don't expect anyone who hasn't traveled this journey to truly understand all we've been through, or any of what I have just written, that's ok, but writing it helps me draw closer to HIM & reminds me that we will SEE Marissa again. I know I don't update very often, but will try to do a better job at it this year.
I'm still determined to write our story, Marissa's story and will be working on that goal as often as I can in the coming year.
Dear Heavenly Father, I ask you to please hold the families of children with terminal illnesses and chronic illnesses tight, let them know without a doubt that they are never alone. Please don't let these children suffer, if they are not to receive their healing here on earth, but in heaven with you. Nothing makes a parent feel alone and abandoned more, than watching the child they love suffer. Seems so many need our prayers right now. There is another child that was just dx with a brain tumor locally. & Tay F is also local & fighting Kidney cancer and needs all our prayers as well, for complete and total healing.
I thank you for the encouraging signs that Kara has been showing the last 24 hours, I pray that her heart can and will be totally healed, so she can live a long and happy life with her family & writing more of her wonderful stories for others. I pray that her mom Linda will also be healed of her cancer, this is such a very hard time for their family & friends.
(Kara is another young lady who was adopted from China, that was stricken with cancer a few years ago and she had been doing very well, until last weekend, when she suffered a major heart attack while with a youth group at her church) Kara has already had 2 books published and she is just 16. I pray for complete and total healing for Kara & her mom Linda.
I pray that we will be able to help the charities & missions that we know and care about, through our new blog website and that we will continue to do what we are feeling called to do by YOU! If for some reason we aren't listening, yell louder, we will hear YOU! We want you to use us however you see fit.
Please forgive any typos tonight, I don't have the time or strength to go back over this to ck for mistakes tonight.
All for now. Thanks to everyone that has been with us since this journey began and has never left us. You know who you are and we are so blessed to have you all in our lives. Love you all so very much.
Blessings, Kim
Sunday, September 19, 2010 9:12 AM CDT Happy Birthday in Heaven Marissa!
We love & miss you still, always will, but we know we would do it all again to have you in our lives and in our hearts forever.
So wish you were still here with us, can't help but imagine what your teen years would be like, how beautiful we know you would be now, as you were and always will be so beautiful inside & out. You touched more lives in your short time on earth, than most of us could in a lifetime and you smiled through everything you went through with courage and grace.
I can't think of purple without seeing you, I can only wonder how wonderful your artwork would be now if you were still here.
What keeps us going is KNOWING that we will SEE you again. We will hold you in our arms again.
Purple flowers, rainbows, horses, orphans, China, your favorite songs, will always remind us of you and bring smiles to our faces.
You are and always will be a blessing to all who knew and loved you and to all who never met you, but knew you through your story and were blessed and changed by your courage and grace, your love of life and family.
Your Dad & I, your brothers and sisters, your extended family, are blessed & changed forever by you. Please keep watching over the orphans of this world, help us open people's hearts to the wonder of adoption, to the blessing of a child not born to them, but miraculously their own.
Please watch over your sisters and your brothers, they miss you so and have had their struggles, especially your older brothers & Grace & Jade.
Thank you for always sending us purple wild flowers & rainbows. Thank you sweet daughter of ours, for the gift of YOU! We love you to heaven & back again until we SEE you again.
Watch over a special little one that needs all our prayers right now. Praying for HIS Will.
We love you forever.....
Wednesday, May 5, 2010 11:16 AM CDT May 4th, 2010
Remembering May 4, 1996 today, as that was the day we first held our precious angel Marissa Faith. She changed our lives forever and her life touched many people all over the world. She was the most wonderful daughter anyone could ever ask for. All our prayers were answered and more when we held her for the 1st time, that wonderful day in China along with the other families in our travel grp. I thank God she was watching over her brother yesterday May 3, 2010, as he was in a rollover car accident and walked away really with some cuts and bruises. Looking at the photos, I know that God surrounded him with angels knowing we could not lose another child. So much I want to write, but the words are all jumbled this am.
Justin is now home from the USMC/Jacksonville, N.C. we drove back and forth to bring him home in 24 hours, so that is why I could not post on the 4th and this is being posted on the 5th.
Alex is sore, but ok. thank God the CT was clear with all the surgeries he has had and all the micro chips etc. in his head already.
I will try to post more of my thoughts of this week when I have had a chance to catch my breath.
thank you all for the continued thoughts and prayers for our family and for remembering our sweet angel Marissa Faith.
Never take life for granted, any of us can be gone in an instant. Hug your children, tell them you love them every day. Life is a precious gift.
Blessings, Kim forever mom to Marissa Faith Miao Burghart
Forever footprints on our heart, forever memories etched in our minds, that can never be washed away, not even with time. We love you to heaven and back again forever and ever.
Tuesday, April 20, 2010 9:52 AM CDT Just a quick update today.
Justin is no longer in the Marines and we hope he will be home with us for a while, until he is back on his feet again. It has been tough these last few years for him.
Linda (Steve's sister) is still going thru chemo for her cancer, please keep her in your prayers that she will get thru this and that her heart will remain strong.
Ava is going thru casting again for her club foot that has relapsed and she will have surgery when the casting is finished. We are making weekly trips to Shriner's in St. Louis, MO, please pray that her foot will be straight when this is all finished and for safety as we travel back and forth. She still laughs all the time and her smile will light up a room. She LOVES to sing and perform for an audience. Watch out American Idol, she already wants to be on the show.
Lots of driving lately, you have no idea how much we have driven these last few weeks.
Alex is still taking college classes full time, on-line and working full time in Lawrence, KS.
Grace & Jade are both doing well in school, but we cannot wait to get them out of the current school dist. they are in, so we are really anxious to get the house in KS sold so that we can really get settled here.
Jalin is making HUGE progress with her speech, but still has work to do, but she tries so hard and does not give up. She is still very shy until you get to know her, but we LOVE her sweet smile and her determination. She is smart and we know she will do great once everyone can understand her. Both Ava and Jalin are doing well with learning to read and both are good at math.
Oh and Isaiah is all BOY and definitely 3 1/2. He keeps us very busy, but still loves to hug and give kisses. We love our little guy, he keeps us young.
Our house is STILL for sale in KS, even though we have dropped the price $25K, but with this economy the housing market has really been hit hard. PLEASE pray that it sells soon. We are hurting financially right now and something has to give soon. We will literally be starting all over again, once the house in KS sells.
PLEASE, PLEASE leave your name when signing the guestbook, it means a LOT to us to know WHO is stopping by to check on us. ALSO, please let us know you have stopped by. Too many read the updates, but never write in the guestbook at all. you have no idea how much it helps us to know that Marissa is not forgotten by those that her life touched.
Blessings and good health to you all,
Kim
forever mom to angel, Marissa Faith Miao Burghart
Monday, March 1, 2010 11:47 AM CST Well it is already March 1st. Seems like we have been "stuck" in a winter funk for way too long. Praying that "Spring" will be here both physically and emotionally very soon.
Linda , Steve's sister, is still going through chemo for her breast cancer and she has been very ill, so we ask for continued prayers for her complete and total healing.
Please also pray for Justin as he goes through treatment for PTSD, from his tour in Iraq. It will be 3 years next week since he was hurt in an IED explosion and watched a young man lose his life. It has haunted him and will for the rest of his life. He also lost one of his best friends a few months after that explosion, than he watched his Granddad lose his battle with cancer with me in Sept., which only brought back memories of watching his little sister suffer from cancer, so these last few years have been VERY tough on our older children and we all need PEACE in our lives more than anything and for the chaos around us to leave us alone for a change. Seems we have not been able to catch a break these last 8 years since losing Steve's Dad, it has been one loss, or something else bad after another, ever since.
I so wish I could take away the nightmares that haunt our son each night and I pray that the military will do the right thing in continuing his treatment and respecting his commitment to serve his country these last 4 years and honor that. He gave a lot and will hurt for the rest of his life, but our military is a MESS and men and women coming home from Iraq and Afghanistan with PTSD are being ignored and falling through the cracks and this cannot continue. These men and women are suffering in silence and they need us to help their cries for help, be heard.
Our house is still for sale in KS and we pray that it will sell soon. We have dropped the price by $25K already and have little room to drop it much more. Hoping that Spring will bring better weather to get the buyers back out looking at houses and an offer will soon be brought to the table. So wishing some investor would just take it off our hands, so we can have at least some peace. The stress of this move has certainly not been easy. BUT, Steve LOVES his job here and we love our new church. We just pray that it is God's will for us to be here and pray for patience that our house will sell and that we will get settled. I know that the house being sold would greatly lesson our stress level, so we could concentrate on more important issues in our lives, like healing the best we can, raising our other children, helping orphan children in this world and helping other cancer families and advocating for our service men and women returning from Iraq and Afghanistan with PTSD.
We so need to get our children into a better school dist. and get moved from our current rental. We dread sending them to school daily where they are now.
We still love our new church and feel that we are at least beginning the healing process that has been at a stand still for the last 6 years. We have had far too much stress these last 8 years and need something positive for once in our lives.
Grace turned 12 yesterday. Cannot believe she is 12 already, where has the time gone? Hard to not try to imagine how Marissa would look today at 14, what things she would be interested in, music, art, clothes, friends. I take the older girls shopping and it is bitter sweet, we missed out on sharing so much with Marissa. They text their friends and she should be texting her friends right along with them. Hard to stop the tears even after 6 years.
People that say: Time heals all things, have obviously never lost a child, or they would know that, time does NOT heal all things. We know that we will never be "healed". A part of us will always be broken, scared, a pain will always be just below the surface and we never know when the tears will start flowing. It can be something so minor that gets them flowing again, or something major, like learning of yet another child fighting this horrible monster we call cancer.
Well, I just needed to get some things off my chest today, sorry to be all over the place, but that is what happens when you have had 8 years like we have had with one thing after another and a seemingly endless roller coaster ride with one thing after another being thrown in our path.
Please keep our family in your prayers, esp. Linda and Justin.
May you have Spring in your hearts today and always,
Kim
Hug your children tight, tell them you love them EVERY Day and never take them for granted. Every single day with your children is a blessing and a precious gift from God.
Monday, February 1, 2010 1:03 PM CST From another cancer mom, but we all feel the same....
Thoughts, Late at night...Share
Yesterday at 11:58pm
Silent tears...
We go through life with a broken heart , though most days you will see us smile.
We get through those days knowing it is just one more, closer to seeing them again.
We still laugh, we still play with other children, ours or our friends' , we still live,
Yet the spark in our eyes is gone ,yet the joy inside has left .
Some days , we adventure out, some days we just dont .
And sometime when we do, reality hits hard so we turn around and run back to safety.
We can be strong but mostly because we have no choice.
If asked how we are, we will usually say ok just so we can escape,
Escape more questions or unwanted advice about how it is time to move on,
We are afraid and we panic at the thought of forgetting a little more each day,
their voice, their smell, the way they kissed us, the way they felt in our arms,
how it sounded when they said our name and even their favorite food...
You might see us walking through graves at all hours or the day and night,
You might hear us talk to a picture on the wall, or a box setting on a shelf,
Remember to never question why we do this, it is not an easy thing
To go sit on our children's grave to share our day with them ,
Or lay in their bed , reading their favorite book,
knowing they will never be there again to turn the next page
before we are done saying the last word .
See, we don't really want to go on without them, we just don't.
They are our hearts,our souls. They make the sunshine and the rain fall,
They send us snow kisses and flower petals in the wind,
They paint rainbows and sunsets, they bring us butterflies and lady bugs,
They always have, just now, they do it from Heaven...
Heaven is where our children had to go so they could be free...
But we are left behind...
And now we go through life with our broken hearts, though most days you will see us smile,
But remember next time whenyou see us smile as you go by your day,
Remember that at night , as you go to bed and close your eyes,
Silent tears roll down our cheeks as we cry ourselves to sleep one more time.
Mimi( 01/31/2010)
Monday, January 18, 2010 4:01 PM CST Dear Friends and Family
Please continue to lift my dear Sister-in-Law in prayer. Today she begins round 2 of her chemo for breast cancer. She was very sick after round 1, so they have lowered her dose for round 2. Please pray that she tolerates this dose better than the first round. She was sick nearly every day for 3 full weeks after the 1st round. She will receive chemo for one day, every 3 weeks.
Our family has been hit hard by cancer, during these last 7 years and it does not seem to ever end. Too many children are still being dx, too many adults are still being dx with cancer and new treatments are not being found.
These families need HOPE, please do all you can to support continued cancer research in all areas. Esp. for childhood cancers.
I just learned today that a dear friend from high school was just dx with tongue and neck cancer, PLEASE STOP SMOKING, PLEASE STOP chewing tobacco, We KNOW it causes cancer. IF you must smoke, PLEASE do it FAR from your children, do not smoke in your car, cracking your windows does NOT help.
I do not want to lose another person I love and care about to cancer.
My husband has already lost a sister to M.S., two months exactly, before we lost our sweet Marissa and his Dad to complications from a fall and abdominal aneurisms, just 2 years before Marissa, now he is terrified he will lose his only remaining sibling to cancer. My Dad was dx with cancer almost 9 mos. exactly from when we lost Marissa and now he too is gone.
PLEASE support cancer research, please help us increase awareness.
Thank you for praying for our family, esp. for Linda.
Blessings,
Kim
Wednesday, December 2, 2009 2:24 PM CST PRAYER REQUEST
Please keep my sister-in-law Linda, in your prayers, as she faces another surgery this friday for a very aggressive breast cancer. Please pray for her surgeons and her oncologist that they will be guided to the best treatment to fight this beast. Please pray for strength for her, for my husband and for my sweet mother in law. This is very hard on all of us, but esp. for them. She is not scheduled to even begin her chemo or radiation until sometime after Christmas.
I am thankful that my mom has been watching out for my MIL now that we are no longer in KS and that she has offered to take her out to see Linda.
Please pray for their safety on the roads.
Thanks & Blessings,
Kim
Thursday, November 19, 2009 2:41 PM CST Love Without Boundaries Bulletin
Love Without Boundaries’ 2009 Gift Guide, “25 Ways to Change the Life of a Child,” contains a variety of ways YOU can help orphans in China. This year consider giving your family and friends a gift that will make a world of difference to children in need.
No matter the amount of your budget, you CAN make a difference in the life of a child. The Gift Guide contains a variety of ways to make a difference in a child’s life.
Please help us spread the word and share our Gift Guide with family and friends who may wish to purchase a gift in your honor. Donations mailed or received by December 31st are tax deductible!
To download the complete Gift Guide or to make a gift this year, visit http://www.lovewithoutboundaries.com/2009_gift_guide.cfm.
*******check out #7 the Art Supplies for the "Believe in me" classrooms and think of Marissa. She loved ART, expressing herself through her artwork. I will never forget the day when she realized she could no longer draw and the look in her eyes. It dashed her spirit. It tore her heart out, as it did mine. Give a child with NO family, a chance to express their feelings through their artwork. You could open a whole new world for a child in China. Marissa would love this! Do it in her memory this Christmas.
Remember that Christ is the REASON for the SEASON. You can make a difference in the life of a child. check out the 25 ways YOU can make a difference in the life of a child at the website above.
Blessings, Kim
I love you to the heavens and back again, my precious Rissa Ru, forever!
Wednesday, November 18, 2009 4:57 PM CST I wrote this about 2 weeks ago and was not sure if I wanted to post it here or not. I just needed to vent my emotions on the particular day that I wrote this. I wrote this a day or so after Steven Curtis Chapman's new CD came out. I am posting it here, mainly so I do no lose it, so that I will have it for the book I am hoping to write soon about her life. Remember all of this was written several days ago
Dear friends & family
This is being sent to a few family members and those of you who I will always consider family, who have been there for us. Please do not forward w/o permission. I have not decided yet, if I will post this to her caringbridge page or not. It is also a work in progress. I have already changed some things from earlier today when I first wrote this. If you wish to forward it to someone, just check with me first.
Blessings, Kim
Live, Love, Laugh, Smile
FAVORITE QUOTES: Let my heart be broken with the things that break the heart of God. --Bob Pierce
We can do no great things, only small things with great love. --Mother Theresa
I listened Steven Curtis Chapman's entire new CD today (BEAUTY WILL RISE) and wrote this below. I could not help but think of Marissa and I could not stop the tears. I got the last copy they had last night. I knew it would be hard to listen to all of it, but I knew I wanted it just the same, since a few weeks ago when I heard just two of the songs he had written for Maria.
To my Sweet Sweet Rissa Ru
It has been over 6 years now since we had to let you go. So why does it still feel like yesterday, but so long ago at the same time?
Why do I feel trapped in time, unable to go on. Why do I still wonder if you are ok?
I know I believe, I know I have Faith, but is it enough? Are the little signs enough to sustain me, to sustain my hope in seeing you again?
I think of you every day and of Maria, Julian, Jessica, Bailey, Brendle, Cole, Cheyanne, Rawan, & Ryker, David Michael & Caleb, the list goes on, of all the children that have gone home to heaven, too soon from their mommy's & Daddy's arms.
I wonder what I did to deserve you. I wonder what I did wrong to lose you so soon.
I wonder how their parent's find the strength. I wonder what I can do to keep your memory alive. Should I be doing more? Can I do more and how?
It hurts when no one asks about us anymore, about how we are doing, like they think we do not hurt anymore.
When I check our on-line journal and no one leaves notes anymore, it breaks my heart. I do not want anyone to ever forget you.....
I wish people did not think that we don't hurt anymore, because we do, but it seems no one cares.
We do not have a lot of money or resources, but still I want to do more, to keep your memory alive in everyone who knew you and in everyone we meet.
your brothers still hurt, they have turned away from God. They say they believe, but their actions sometimes seem as if they don't believe He is real, like Santa and the tooth fairy.
your sisters were too young to remember everything, but they will never forget you, they remember the little things, that still amaze me.
the little ones did not meet you, but they know you, they know you are watching over them and they have an innocence, I wish I had. your little brother loves you, as if you have met before somewhere on a cloud.
I know that on the day that you went home, that you held a little baby born that day in China and whispered in her ear to give her the strength to survive, to fight, to live. Somehow you and God gave us the signs to not be afraid to bring her home, that she would be ok.
Her names means Love and Life proceeding forward through the ashes. Her smiles is like a moonbeam sent directly from you to my heart, but still my heart aches to hold you in my arms.
Rissa, my beautiful angel, teach me to put my trust fully in HIM, to believe and know that I will hold you in my arms again. Help me to Love fully again, to not hold back, to live again, until we see you again on the other side of the rainbow.
Take God's hand and pray with Him, to watch over us, to teach us all to trust again in Him, to love as He and you would want us to, until we see you again, the other side of everything that is beautiful.......
you saw all things beautiful from the moment we first held you, we could see that in you. you had more love & wisdom, than anyone I have ever known. Help us all be more like you, more like God, until we see you again the other side of the rainbow.
Past the clouds, past the rainbows & stars, awaits the most beautiful angel God ever made. I held her for a moment, I was in awe of her love from that very first moment, I still am...... God I still ask why, I still have a hundred questions, I want to live your will until I see our angel again.
Help me to be the person I want to be and the person, you will me to be. I know you have plans for us, I do not want to waste my time here, I want so much to know your will. help us all to truly believe, to live & love again for you, as our angel always did.
I cannot wait to see your smile, your beautiful eyes, to feel your love in my arms again. I pray Spring is coming..... & we will be together again.
I am not finished with this, but this is what I wanted to put down on paper today....... so far (Above), I have also added to it (below):
I love you to heaven and back again forever, my beautiful Rissa Ru. My sweet, sweet, wonderful Marissa Faith...... Jesus PLEASE show us the way........I will be forever blessed to be your forever mom and you are forever in my heart, I could NEVER forget, your footprints are in my heart forever.
Beauty from Ashes Isaiah 61:3 and provide for those who grieve in Zion— to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the LORD for the display of his splendor.
Waiting & Trusting that I will hold my angel in my arms again... counting down the days. I admit some days are hard, but without Faith, we have no hope....Praying to KNOW His Will for my family....to listen and hear HIS WILL...to be Faithful today, tomorrow and always, that no matter how hard the road, I will know that I am never alone.
I wrote this on a friend's facebook wall today in response to her post on the CD: I finally got the courage to listen to the entire CD today. I knew it would be hard from the two songs I had already heard, but could not have imagined the raw pain it would trigger. I cried buckets for our angel, for Maria, for all families who have had to let go too soon. Praying to know His will still, for our family. I pray I hear him through the static of this world we live in, until we see HIS FACE! Until I see my angel's face again and hold her in my arms forever, when I will never again have to let her go....
Wednesday, October 21, 2009 9:41 AM CDT I HATE CANCER, can we ever get a break? I just lost my Dad to cancer 3 weeks ago Monday and now we get the news that my sister-in-law has been dx with a very aggressive breast cancer. October is National Breast Cancer Awareness month. She will have surgery on the 3rd of next month. PLEASE keep her in your prayers. I will update when we know more.
Lord Grant us all Strength and Understanding, guide the doctors to the very best course of treatment. Marissa, please watch over your Aunt ____, you know who is in need of prayers right now. Dad, we need prayers for CURES for all cancers.
Blessings,
Kim
Sunday, October 4, 2009 8:29 AM CDT Dear Friends & Family
My Dad went to be with Jesus on Monday, September 28th, 2009 at about 1:10 p.m.
Friday -Monday were very hard on him and on all of us that were with him
I will not go into details here, as it is just to hard to re-live again.
I am thankful for Father Bill who had become like a brother to my Dad, as he came up to Hospice with us as often as he could and was with us when my Dad passed away. His love for my Dad was so obvious. His humor, wisdom, grace, compassion and love of our Lord and Saviour were so appreciated by all of us over these last few days. Three Priests celebrated my Dad's funeral Mass on Thursday. Vic Miller sang Ave Maria and he sang it so beautifully. Vic did not know if he could do it, as he and my Dad had become very close, but he said he had to and he did it. I wish we would have recorded at least that song, as I have never before heard it sung so beautifully. the choir sang for the Mass as well and they left an empty chair with my Dad's picture on it, as they sang, as Dad had sung with them until about a week ago at another parishioner's funeral.
Pray for a cure for all cancer.........too many people are still being diagnosed with cancer and still, there are too few cures out there. http://www.caringbridge.org/visit/johnwillett
Blessings, Kim
Live, Love, Laugh, Smile
FAVORITE QUOTES: Let my heart be broken with the things that break the heart of God. --Bob Pierce
We can do no great things, only small things with great love. --Mother Theresa
Friday, September 25, 2009 9:48 AM CDT Dear Friends & Family
Please pray for my Dad, as we fear his time with us now is very short. He is sleeping all the time now, is not really eating and is using his oxygen about 100% of the time. Please stop by his caringbridge site and leave a note: http://www.caringbridge.org/visit/johnwillett
I hate cancer. Pain meds are not giving him relief, he vomitted all morning and he has nothing in his stomach, so was all bile and gas etc. Vomitting makes his back hurt all the more and with no platelets, he could bleed anywhere. He is still running a fever of 100-102, meds are not helping that either.
I am here with him and Jeanette for a few days and Justin was able to get leave for a week to be able to come home with me to see his Granddad. Steve is with the girls and will bring them here later. We have no idea for sure how long he has.
Please pray for all cancer patients and their family. It is hell watching someone else you love being taken by this beast.
Thanks & blessings, Kim
Thursday, September 10, 2009 10:40 AM CDT September is National Childhood Cancer Awareness Month
September 19th would have been Marissa's 14th Birthday
September 20th, will mark 6 years since our precious daughter went home to be with Jesus.
In honor of National Childhood Cancer Awareness Month and in honor of Marissa's birthday, I will be walking 10 miles on Saturday September 19th, 2009 at Shawnee Lake in Topeka, KS. I will be walking to raise money for both CureSearch and for Love Without Boundaries, for their work with orphaned and seriously ill children in China. Something we know that Marissa supported, as she wanted ALL orphaned children to be adopted and to have the medical treatments they needed to survive, so they could find their forever families here on earth. We were blessed to be her forever family and to know that she had a family who LOVED her through her illness and treatment gives us some comfort, but knowing that seriously ill orphans around the world have no one to love them unconditionally through their illnesses breaks our hearts. We cannot imagine how devastating it would have been for Marissa to have gone through her illness ALONE without a family and without knowing the love of Jesus Christ, it would have been unimaginable for her and for us.
I am asking anyone that wants to sponsor me in this walk, to please mail your donations directly to whichever organization you choose, CureSearch or Love Without Boundaries, I will post the addresses below, you will just need to write: Walk in memory of Marissa Burghart 9-19-09 on the memo blank of your ck. My personal Goal is to raise $1000 minimum for each group in Marissa's memory. Please e-mail me to let me know about your wish to donate, so I can keep track of how close I am to reaching my goal.
I will also be walking for my Dad, who is also fighting cancer. He has Multiple Myeloma and was dx just 9 months after we lost our sweet girl. My Dad's counts are critical right now. We would appreciate your prayers for him at this time as well. His platelet count is only at 3000 and I think normal is suppose to be 140,000, his RBC was only 6.3 this week, he rec'd 2 units of blood yesterday. He is using his oxygen more and more. We need a MIRACLE! He is only 66. PLEASE Keep him in your prayers. His name is JOHN. Marissa so loved her Granddaddy, as do we.
Here is some information about Childhood Cancer, from the CureSearch website:
The Impact of Childhood Cancer
• Cancer is the #1 cause of death by disease in children, cutting short the lives of more children under the age of 20 than any other disease.
• 1 child out of 5 who is diagnosed with cancer dies.
• 3 out of 5 children suffer from long-term side effects.
• Every school day, 46 young people, or two classrooms of students, are diagnosed with cancer in this country. More than 12,500 children are diagnosed with cancer each year and over 40,000 children and adolescents currently are being treated for childhood cancers.
• The average age of a child diagnosed with cancer is six years old; saving the life of a child with cancer gives our children a future; approximately, 66 years of life’s milestones and dreams to celebrate.
Only Research Cures Childhood Cancer
• Each day that cooperative group pediatric cancer research goes under funded the road to discovering new treatments and cures become longer, putting more children at risk.
• For the first time since its founding, the decrease in funding to the Children’s Oncology Group moves research to a dangerous level where studies and accompanying laboratory research that hold promise will not take place.
• Reduce Enrollment in Clinical Trials: The COG reduced enrollment in our clinical trials by 400 patients in 2007 and put about 20 new studies on hold indefinitely related to resources available to fund them.
• At a time when breakthroughs can be made in treating all childhood cancer and the quality of life for children with cancer improved, the continued decline in government funding will endanger the development of new clinical trials and threaten progress in curing childhood cancer.
About CureSearch
• Through public education, advocacy and fundraising, CureSearch National Childhood Cancer Foundation supports the work of the Children’s Oncology Group (COG), the world’s largest cooperative cancer research organization that treats more than 90 percent of all children with cancer.
• The Children’s Oncology Group (COG) unites the best of the academic and clinical research worlds to move the most promising treatments from the lab into clinical trials. This association of more than 5,000 dedicated experts in childhood cancer research and treatment are located at more than 235 leading Children’s Hospitals, the finest University Hospitals and Cancer Centers in the United States. By working together, cure rates are improved at a much faster pace than any one individual or single institution could accomplish alone.
• The COG sets the standard of care and allows children with cancer to be treated close to home.
• A high level of participation in clinical trials, combined with the quick sharing of information through the Children’s Oncology Group has led to phenomenal improvements in childhood cancer survival rates.
• Fifty years ago, a diagnosis of childhood cancer was once a death sentence.
Today, as a result of the research of the COG, the cure rate is 78verall.
However, still too many children continue to die.
• Together, CureSearch National Childhood Cancer Foundation and the Children’s Oncology Group are committed to conquering childhood cancer
through scientific discovery and compassionate care – until we reach the day when every child with cancer is cured and cancer can be prevented.
Each Child Deserves a Chance to Live a Whole Life: We Can Reach the Day When Every Child with Cancer is Guaranteed a Cure!
• The story of childhood cancer is simple—we are within reach of a cure. Medical research tells us that with proper funding levels – we can conquer childhood cancer.
• CureSearch is striving to give each child diagnosed with a cancer a whole lifetime of dreams and milestones to celebrate. The death of one more child to cancer is one too many.
For additional information, please visit: www.curesearch.org or email them at info@curesearch.org.
Here is their address:
CureSearch
National Childhood Cancer Foundation
4600 East West Highway, Suite 600
Bethesda, MD 20814-3457
The address for Love Without Boundaries is:
Love Without Boundaries
P.O. Box 25016
Oklahoma City, OK 73125-0016
www.lovewithoutboundaries.com home page and
https://www.lovewithoutboundaries.com/medical.cfm is their page letting you know about their medical programs for healing ill children in China.
PLEASE take the time to visit their website. LWB is an organization that Marissa knew about and supported with all her heart. LWB also has Marissa's cards for sale in their e-bay store, showing some of her artwork. The sale of her cards goes directly to help their medical missions and also to help in supporting their foster care programs, so the children can be in a family setting instead of in an institutional setting while waiting for medical treatments, or waiting for a forever family of their own.
CureSearch and Love Without Boundaries, CAN Help children's Milestones, DREAMS of LIFE, FAMILY and LOVE, COME TRUE. Please help me, help them, help the children, on September 19th, 2009. You too can join me in the walk, either in Topeka at Lake Shawnee, or wherever you are on Marissa's birthday, you can walk with me. I will begin walking at 9 AM at Lake Shawnee Tin Man Circle. Our family will be wearing our Purple and Gold shirts from CureSearch, so look for at least 7 of us, possibly 8 if Alex can join us and is not working that day. you can walk one mile with us, 5 miles, or all 10. Hope to see some of our friends in Topeka join us! Help us increase awareness of Childhood cancers, help us, help these children's dreams come true for Marissa. God Bless you.
Again, PLEASE sign our guestbook so we know you stopped by. It means a lot to us. Blessings, Kim
Rissa, I LOVE you to HEAVEN & back again and cannot wait to hold you in my arms again, when I will NEVER, have to let you go again. XOXOXOXOXOXOOXOXO.......forever, mommy
Tuesday, August 25, 2009 10:23 AM CDT http://www.beatcancertoday.org/index.php?option=com_content&task=view&id=25&Itemid=39
The children in Iowa have been treated to visits by athletes and staff from both the University of Iowa and the Iowa State University athletic departments. These athletes and staff have entered these hospital rooms as heroes…only to realize as they left, that they had met the greatest heroes, the young ones fighting for their lives.
So, during the Big Game in Iowa on September 12th in Iowa, we celebrate our children and thank the athletes and staff of the U of Iowa and ISU for their support of these kids. While these teams will fight each other on the field, they have united in the fight against childhood cancer.
Won’t you join us in celebrating National Childhood Cancer Awareness Day on September 12, 2009?
Proceeds to benefit CureSearch
Beat Cancer Today.org has T-shirts to wear on Sept. 12th for National Childhood Cancer Awareness Day. Today is the last day to order in time to wear them on Sept. 12th. They have added more colors. The Front of the shirts say BEAT CANCER and the Back of the shirts say National Childhood Cancer Awareness
The shirts are all $10 each, add $2.50 for XXL however. They have size 2-4T thru XXL and in many colors. We will be ordering purple of course in memory and honor of Marissa. Proceeds from the shirts goes to CURESEARCH. Most of the shirts have the GOLD writing on them, as that is the color for Childhood Cancer Awareness. Some of the new colors they have just added, have different colored lettering. I am glad that the purple shirts have the GOLD lettering.
Once we order ours, we will be able to wear them every year on Sept. 12th and again on her birthday the 19th and throughout the year.
Hope you all will join us in supporting Childhood Cancer Awareness Day by wearing your shirts on September 12th! Please help us increase awareness. Spread the word! We need more voices for the CHILDREN. We need a CURE!
Blessings,
Kim
HUG your kids, each & EVERY day!
PLEASE SIGN OUR GUESTBOOK, so we know you stopped by. You have no idea how much that means to us.
Wednesday, August 12, 2009 9:54 AM CDT I read an update on another mom's site today that broke my heart and flooded it with memories and emotions: here is a link to her site: http://www.carepages.com/carepages/JuliansWorld/updates/2292851
the photos of Mimi and Julian are so beautiful, I wish I could mend her broken heart, but I don't know how, I know her pain...
Please pray for all parents that have had to say good-bye to a child:
Hug your children tight, tell them you love them every single day... take lots of photos, cherish every day you are blessed to have them with you, never take a moment for granted......i miss our girl so much still today and always will until we see her again, but she should be HERE with us, we should not have to imagine EVERY single day, how things would be if she was still HERE with us, how she would look today, who her friends would be, how her love of art would have progressed to NOW, TODAY, oh I miss her smile, her HUGS, her love for everything and everybody, her compassion for others, her enormous and wonderful heart for children that waited for their forever families........don't put off until tomorrow, something that you can do TODAY, for TODAY, may be all any of us have left...
I miss the butterfly kisses at night, I miss stroking my fingers through her beautiful hair, I miss how she could light up ANY room with that gorgeous smile, with her laugh, her precious heart for everyone, I miss picking her up from school and how she would yell, MOMMY or DADDY and run and give us the most wonderful BIG hugs, her wisdom was so beyond her years, her heart was so amazing......GOD has our angel and she is no longer in pain, she is no longer trapped in her body that had failed her and for that I am thankful, but I long to know WHY she had to go so soon... I try every day to TRUST in HIM and hold onto the HOPE that we WILL be with her AGAIN one day, but I can't help wishing she was still with us here, I can't help wanting to watch her grow up, become a woman, marry, have children, watch her become all she dreamed of being, do all the things she wanted to do.....I can't help dreaming about her wedding day, her first child, all the things parents dream for their children... who she would have become, Although, I know whatever she would have done with her life, would have been wonderful and I hold onto that, for that is all I can do.... I can't take her to school anymore, I can't pick her up, I can't take her shopping for school clothes, I can't open the school photos in anticipation anymore, I can't let her have her friends over, or take her to see them, help her with homework, hang her artwork on the wall or the refrigerator, pull a loose tooth, give her butterfly kisses at night, watch her grow up and go off into the world on her own, so for those of you with children going back to school. cherish every day, cherish the memories, the little things we all take for granted with our children so often, HUG them every day, tell them you love them every single day and never let them go to sleep without knowing they are loved. Give thanks to GOD every single day you are blessed to have them with you...Pray for their health, their futures and never take it for granted that you will get to see all your dreams for them come true.... cherish the firsts of everything, keep a journal, write it all down, takes tons of photos and videos, celebrate every day we are given and live life to the fullest each and every day...
FOREVER blessed to be her forever mom and longing to hold her tight in my arms one day, when I will never have to let her go again.......
Love & Blessings ALWAYS,
Kim
Cherish your children, love them, hug them, capture their smiles and their innocence and hold them tight.....
PLEASE sign our guestbook so we know you stopped by, it means a lot to us. Thank you!
Monday, May 25, 2009 11:03 AM CDT This story can be read as a little girl or boy. Have tissues ready. Fitting this memorial day and I cannot help but think of our sweet Marissa when reading it, as well as all the other sweet children and families we have met since Marissa was dx with cancer.
Hope this touches your heart, like it has mine. God bless all families dealing with cancer and other life threatening illnesses and suffering. I pray they will feel HIS presence with them always, so they will know they are not alone in the journey.
Blessings,
Kim
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. (s)he especially enjoyed the love she/he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. (S)He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", (S)he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.
Just then the little soul got a wonderful idea and could hardly contain h(er)imself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.
Thus at that moment the brave little soul was born into the world, and through h(er)is suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."
Believing in God's promises . . .
" . . .For I am the LORD who heals you."
Exodus 15:26
Wednesday, May 20, 2009 2:14 PM CDT Prayer request for God's will for our family in our move.
Sadly, our buyers have backed out and our house is once again on the market.
The buyers were 1st time buyers and going with an FHA loan to take advantage of the tax credit for 1st time buyers and with FHA loans, they have gotten VERY picky about every little detail and so just one week before we were to be closing and moving, we are forced to put our home back up for sale with nearly everything packed that matters and we may lose a 4th house where we are moving, as we obviously will not be able to close there next week either.
We are both down, tired and confused about what to do now and unsure if we are truly doing God's will for our family with this move. Steve finally has enough time off to be home for a few days, we were suppose to be packing for the movers next week, finishing any way. He even went on-line to look at jobs if he has to move back. He loves his new job etc., so that is last resort, but after the last 24/48 hours, he was ready to just move back now and find another job.
We have to put a new roof on the house and that is going to cost us around 9K, so have had to re-adjust our asking price after all we have already done to our house. We also have to find someone to repair the back deck off the master in case anyone else goes FHA, paint the siding and repair a few areas of siding etc. All this after doing nothing but home repairs and upgrades for the past 6 mos., makes us all want to just give up the idea of moving and just stay here. I am tired and need a REAL vacation. A spa sounds really, really nice, but that is out of the question for sure with the now way shot budget. I did finally break down and got a hair cut after 5 + mos. and got the gray hidden at least for now. YIKES! The stress has hit me hard and I just want us all to be in the same place.
Will there ever be peace in our lives again since we lost our precious Marissa?
It has been one thing after the other since that horrible day when she was diagnosed. Will we ever feel like we can truly decorate and enjoy any of the holidays again? We had so hoped that this move would bring some normalcy back into our lives, but I am doubting that things can ever be "normal" again or that we can ever bring peace back into our lives.
Oh how I miss my sweet girl. I miss her smile, her hugs, her love, her zest for life, her ability to bring so much JOY with her wherever she went.
Please pray for God's will for all of us. Please also continue to pray for my Dad and his battle with the terrorists we call CANCER.
Blessings,
Kim
Saturday, May 9, 2009 9:37 PM CDT Sadly, my (Kim's) Grandmother passed away at 3:30 this morning. Visitation will be Tuesday at Brennan Mathena in Topeka, KS from 5-6:30 PM on Tuesday. Rosary will be said at 6:30PM and Mass will be at 10 AM on Wednesday.
Please keep my Dad and his siblings and their families in your prayers. My Dad sounded exhausted when he called at 7:15 this morning to tell us the news. I pray this stress does not wear him out. It will be a hard week for all of us, but especially hard for my Dad and his siblings. With my Dad's cancer, I worry about the toll this will take on him.
Blessings,
Kim
Friday, May 8, 2009 9:06 AM CDT Just a quick update on what has happened since the last update.
We SOLD our house, BUT, are not sure if it is still SOLD or not, now that the inspection has been completed. We knew this couple was picky, but they have asked for the moon now and we do not have the MOON to give them, & now to top it all off, we lost about 1/2 of our fence last night during a powerful storm. Only God knows if we will still be moving in 3 weeks now or not.
My Grandmother only has a short time left here on earth, she turned 88 last week. She is my Dad's mom. My Dad's counts continue to be critical and his bone marrow is not recovering, not good. I think he has reached his cancer threshold and has no more ways to fight, his RBC, WBC and platelets just are not where they should be, not even close and the transfusions are just not helping for very long, a few days at most and they drop back down to critical levels. I so wish we could see him more often.
Justin came home on leave before he was to leave for Afghanistan and ended up having surgery and being home longer and not shipping out with his unit. I told him it was a GOD thing and for some reason God knew he needed to be state-side with all that is happening with the move, my Dad and Grandmother. They are telling him to be prepared to deploy at the end of May. We are praying they will change their minds and keep him state side due to his surgery.
The girls are excited about the move, but nervous at the same time. They will be in year round school when we move and will no longer be in private school, as we will not be able to afford it where we are moving to.
I will let you all know if the house is once again back on the market and try to keep you posted on my Dad and Grandmother. Please keep them in your prayers. Grandma Connie is doing well and excited, but nervous about selling her house soon too and moving back to Topeka to be closer to her friends. She has found a house near friends and has until Sept. to sell her house in Newton. We will surely miss having her so close, but have promised to fly her to see us at least a couple of times a year. The kids will be lost w/o her being here, as Isaiah always says: "Grandma's home", when she comes to our house. He thinks she lives here. I think Jack, my sister's youngest thinks the same thing when she is at their house in Wichita. He always gives her a list of things she HAS TO BRING with her when she is at their house, too funny. She even plays with him in his play house. Not many Grandmother's that will do that!
Well, gotta get something done today and need to call the insurance co. about the fence. Our deductible is so high, that they probably will not cover it, we will see.
Blessings,
Kim
Thursday, March 26, 2009 5:25 PM CDT Update on my (Kim's) Dad and what is happening in our lives this week. My Dad is not doing well. His platelet count is down to only 19. He had wanted to race his car this season, but sadly will not be able to after all and has decided to sell his car. I know how hard that decision was for him to make. They called hospice yesterday to go over everything they can do to help. We were all looking forward to watching him race his John Deere Green race car one last season. I wish we could have been able to fix up the Anglia (my (Kim's) brother's car) so that John could have seen it done before he is called home, but it would take a miracle. My only brother was killed in a car accident 20 days before his 23rd birthday, on April 24, 1984. He had an antique Ford Anglia that he so wanted to restore. After he passed away, my Dad was going to finish it for him, but he had not gotten around to it before he was dx with cancer, just 9 mos. after we lost our precious Marissa. My dad gave the car to Justin to finish and with him in the Marines, it is still waiting to be restored. I wish there was some way to get it done in time, but we do not know of anyone to do it for us, nor do we have the financial resources to get it done. It would truly be a miracle and it would mean the world to my dad to see it done before he is called home. I have been doing some family research and have learned a lot about my GGG Grandparents and on down to our family and had wanted to share a trip to Fancy Farm, KY with my Dad, but we may not get to take that trip now. Fancy Farm is near Paducah, KY and I have learned that we have tons of relatives in that area. We are looking forward to going to their annual picnic in August and hoping to meet quite a few cousins, etc, while we are there. I never knew we had so many relatives, but I guess it makes sense that we would, since my GGG Granparents had 82 grandchildren and that is not counting any great grandchildren etc. They actually established the 1st Catholic community in that area and there is a monument in their names at St. Jerome in Fancy Farm, KY. I have always loved that area of the country and I used to love to listen to my Gr. Grandpa Pop sing MY OLD KENTUCKY HOME and listen to him tell us that he played the left handed fiddle and that his sister played the PIE ANNA (PIANO). He had at least 10 other siblings and they all loved music and won their mother the 1st Electric Range in KY in a music competition. I wish we had known all of this info sooner, so that my Dad could have gone to see the monument and to meet his long lost relatives and to see where his Grandpa was raised.
Justin is at 29 Palms training to leave for Afghanistan, some time in May most likely, but it could be as early as the end of April. He is losing weight and I can tell he is very homesick again. He wants to be HOME, esp. with his Granddad having cancer. I think he has called me 4 times already today. He has lost a lot of weight training in the desert heat. I pray he will get his full 10 days leave before he has to go over. He said today that it could be shortened to just 5 days. Seems so unfair, they deserve their full leave and Justin really wants to be home with his family right now.
Steve was going to come home this weekend to help me with the house, but due to the weather, it is looking like he will not be coming home this weekend. They are predicting a late season snow storm here in KS starting tomorrow.
We have two families that want to see the house next week and there is no way I can get all this done by myself and I also want to be able to spend as much time as I can with my dad. I had hired a guy to help me with some projects and he completed a couple and now cannot finish the rest due a family emergency as well. I am hoping I can find someone else who can do the work well and not charge us a fortune and can get the work done quickly so we can show the house next week.
Mother Teresa used to say: " I know that God never gives us more than we can handle, but sometimes, I wish He would not trust me so much". I know what she meant by that for sure.
Please keep my Dad in your prayers as well as my sisters. We are all taking this pretty hard, as is my mom.
Blessings,
Kim
Friday, March 13, 2009 10:32 AM CDT PRAISE GOD our friend has been released and is home safe with his family. IT is truly a miracle and PRAYER does work. Thank you all who have been standing in prayer with us for this precious family. Please continue to pray for their safety and that there will not be any retaliation from these horrible gang members. It has been a very long 24 + hours, about a day and a half and he was finally home about 2 AM CST and heading home to be with his two young children. We take WAY too much for granted here in the US and have no idea how blessed and fortunate we are. Even in these hard economical times, we still have it better here than in many other countries. I am so glad that our children have helped us see the WORLD in a whole new light and that we have met SO many incredible people all over the world because of them. Many will be part of our family forever. We may have our struggles, we have faced so much, especially these last 7 years, but things like what has happened to our friends in Guatemala, make us stop complaining and make us reflect on how very blessed we still are. We give thanks to our heavenly Father for hearing our prayers and bringing our dear friend home safely to his family. We continue to hold them all close in prayer for their continued safety and protection from harm.
Blessings, Kim
Wednesday, March 11, 2009 9:21 PM CDT URGENT UPDATE
I can hardly type this through the tears and I cannot find my glasses, but I have a DEAR FRIEND that needs the heavens flooded with prayers tonight.
Melany, our dear friend in Guatemala called us tonight and was crying hysterically. Her husband Marco, also our dear friend, has been kidnapped and they have demanded a half a million Guatemalan Quetzal in ransom or they say they will kill him piece by piece and we do not know how to help. That is over 80K in US dollars and we are broke living in two states right now with 5 children at home, one in college, one in the Marines. This is a nightmare. I am afraid all the time that something could happen to one of our friends there, but hoped and prayed they would remain safe. Melany and Marco are young still and have two young children, little Marco and Nathalie and they do not have anywhere near that kind of money. Melany knows that we do not either, but she had to call someone for help. We may not be able to help financially ourselves, but we know that God is more powerful than these captures and with HIM, ALL THINGS ARE POSSIBLE and HE can bring these captures to their knees. One things we CAN DO IS PRAY. I feel so helpless, as they are part of our family forever and I cannot believe this is happening. this kind of thing happens in countries like Guatemala all the time, but I never really wanted to believe that it would ever hit this close to home, but we do worry all the time for ALL of our friends there, that it could.... and now it has. GOD can bring MARCO HOME. We will NOT GIVE UP. We will keep storming the heavens for his release and we ask all of the prayer warriors out there to PLEASE join us. If you would like a picture of Marco and Melany, please e-mail me and I will e-mail it to you.
PLEASE dear believers, be on your knees with us in prayer for Marco and his sweet, precious family. Marco is also one of our son Isaiah's Godparents. Melany is as well. He has two sets of Godparents, one here in the US and one in Guatemala, as you can never have enough Godparents, praying for you and loving you and teaching you about HIS LOVE.
Blessings & thanks,
Kim
Wednesday, March 11, 2009 8:35 AM CDT URGENT PRAYER REQUEST:
Please keep my Dad in your prayers.
My Dad got his cancer counts back and it is not good. His counts are at 5100 and his platelets are at 26, which is critical. They are stopping all chemo and he will see the doctor again on Thursday and on Monday. He says he is feeling fine, accept for a really bad cold. He fell at church about a week or so ago, so he also has a nasty black eye. We have been wanting to go to Topeka to spend time with him for the last several weeks, but had been unable to with all the crud going around, we did not want to expose him to anything with us all being sick and him being on Chemo and having his counts low, but will be going up to see him no matter what over spring break next week. We have had someone sick for the past 9 weeks! Between Strep, flu, colds, Ava getting pneumonia with lowered o2 sats, it has been a rough last few weeks, that is for sure.
Today is Steve's birthday and I wish he was here, or we could be with him to celebrate today with him. The kids really miss him. We are hoping to be able to see him over Spring break as well.
We showed our house to someone on Monday. I think they really liked the house, the space and the potential. Pray they make an offer, or that someone else will soon, so we can find a house and get moved, so we can all be together in one state. Maybe we are still here due to my Dad's cancer. God knows better than we do, where we are suppose to be and when we are suppose to move, so we will continue to trust in HIM that this will all work out. We want to do HIS WILL and not ours, we just have to keep reminding ourselves that, as we are only human and we have to work on PATIENCE daily.
Please pray for all children battling cancer and their families, that cures WILL be found.
Please also pray for a young girl I have learned about, that was in a car accident with her mom, brother and friend. Her name is Ivey Weldon and she is 12 years old. She suffered a fractured femur and severe head trauma and they have been unable to repair her broken femur due to the intracranial pressure. Ivey has THE most incredible smile. Please visit her site and pray for her and her family, that she makes a complete recovery from this horrible accident. http://www.carepages.com/carepages/IveyWeldon/patient
God is our strength and refuge, a very present help in trouble. Psalm 46:1
Blessings,
Kim
Thursday, March 5, 2009 12:07 AM CST I saw this on a blog today and thought I would post it here.
**Life is not about waiting for the storm to pass. It is about learning to dance in the rain.**
Great reminder for myself and all of us. The storm we are in right now will pass in HIS time. I just have to keep reminding myself that every day.
Blessings,
Kim
Wednesday, March 4, 2009 4:39 PM CST Well, February is already gone and March is here and I am no closer to being done with the house so we can get it sold than I was a month ago, due to all the sickness we have been passing around here. I have been really sick for over a week now, almost 2 weeks and it has not been fun, that is for sure. I spent from 3:30 until almost 8 PM in the ER Friday night. Being a single mom to 5 is hard enough, but when you are really, really sick, it is even harder to keep up. Thank God my mom has not moved yet, as she helped me this weekend some and my niece Mandy helped as well. I could not have gotten through the weekend w/o their help. I am still sick, but gradually getting a little better. Isaiah is still coughing a lot, but he has not run a fever at all, thankfully. I can't remember the last time I was this sick.
Searching for a new house is getting very depressing, as no one will take a contingent offer these days until we sell our house here and the houses we have found that are big enough and that we can afford, will not do a lease purchase or a contingent offer, so we are stuck not even being able to make an offer on a house until our house here sells.... which could take who knows how long. I think we have looked at well over 30 homes now and hundreds on the internet and now all that time feels like such a waste when we cannot even make an offer until our house here sells. I can't keep caught up with everything by myself, it is just NOT possible. The kids miss their dad and I miss my husband and our older sons. Makes me miss our sweet angel Marissa even more. things were simpler and a lot less stressful before she was dx with cancer, that is for sure and it seems like we have been hit with one thing after another ever since. Sorry to gripe, but I have to let it out somehow, somewhere w/o upsetting the kids and lately this has become my place to journal like I did while Marissa was fighting cancer. Before she was dx, we had so much JOY in our lives. CANCER SUCKS. Lydia, dear sweet Lydia is now with Marissa in heaven and another family has lost their daughter to the horrible beast, we call cancer. My heart is breaking for her precious family, who has to learn how to go on without her here. I am filled with ANGER and WHY's. Children should not be dying before their parents. It is just not right. Children should not have to suffer like this. Our govt. needs to improve funding for research for cures for childhood cancers and brain tumors.
My Dad got only a 1/2 a dose of his Chemo on Monday and the Doctor wants to talk to them about where they go from here on Friday. I HATE CANCER. We have not been able to go and visit him for over 2 months due to someone being sick here every single week for 8-9 weeks now. We keep planning to go to Topeka to see him and someone else gets sick, so we can't go, as his counts have been low and we do not want to expose him to the CRUD we have been passing around. that is for sure. He has enough on his plate already, but I really want to see my dad and to spend some time with him and let the kids spend some time with their Granddad.
I e-mailed some guy about giving us an estimate to do some of the work that needs to be done to the house. PRAY he is reliable and affordable, so we can officially get this house on the market, at last and please pray that our house sells quickly, so we can get moved. I pray for God's will in all of this and pray daily that we are doing the right thing. The current housing market and economy have not made this move easy, that is for sure and we need LESS stress and not MORE stress and I pray that after this move is done, that is what we will have, less stress and more joy and more family time, so we can enjoy our other children.
Justin is at 29 Palms, CA for more training for the next 3-4 weeks, than he will be back in NC for a couple of weeks after that, before coming home on leave before shipping out to Afghanistan. He will probably only have about a weeks leave. Please keep him in your prayers that he will be safe from harm and that his fellow troops will also be safe. He has already spent 13 months in Iraq and he was hit by an IED after having been there for just 9 days and I do not want to get another phone call like that for as long as I live and I worry about PTSD, as it is from his time in Iraq. I miss him so much.
Please also pray for Alex. He is trying to decide where to go to school next year, KU, or a community college, or move with us. Pray that God will show him clearly where he is suppose to go. Being a mom who has lost a child, I selfishly want him to move with us and live at home, but I also know that only he can make the final decision, but I pray that he looks to God for help in making that decision.
Anyone wanting a 4 bedroom, 3 bath house on 4 acres, with a pool, out bldg., near Wichita, KS, please, PLEASE come see our house, or e-mail me for more info or photos. I wish that Design to Sell would show up at my door step. We have done a lot to the house, but with kids and animals there is always more to do, if you know what I mean and we have only been able to do so much to the house since we have lived here, as we are always busy and we are definitely not wealthy. Like I have said before the last 7 years have been tough and that's saying it mildly. Anyone want an investment property? Anyone know VERN Yipp or anyone else from HGTV?
Well, gotta get back to working, I have taken a long enough break. I treated the kids to DQ when I picked them up from school today, they were thrilled, but now I think the sugar has gotten to them and I need to get them back to doing their homework and chores.
Thanks for dropping by to check on us and thank you for the continued prayers.
Blessings, Kim
Marissa I love you all the way to China & to heaven and back again. My sweet, sweet Rissa Ru, my heart, my Joy, my soul mate. Until you are in my arms again, I will hold you in my heart. God, please send a cure for all the children fighting cancers. It has been over 5 years since Marissa went to heaven, but we are still a cancer family and always will be. We pray for all the children and their families still fighting and will continue to pray for a cure, so that one day, families will not have to say good bye too soon to their babies due to CANCER.......So that one day families will not have to watch helplessly as they watch their child suffer through cancer treatments...the doubts, the whys will be with us until we are reunited with Marissa again one day.
Saturday, February 14, 2009 4:21 PM CST Dear Marissa
Oh how I wish you were here today. It is Valentines Day and we did not get to go to see Daddy, as Ava has had Pneumonia, Grace has had a bad cold as well and now, Jade, Jalin and Isaiah all have runny noses. I was also not up for the drive after having fallen off a ladder painting the other night and am pretty bruised and sore all over, so was not up for a 13 hour drive with your siblings and our puppy Asia in the car. I ran out of paint and need to keep painting so we can get the house sold, but did not have a sitter to run to Walmart and did not want to drag everyone with me. Living in two states is killing us financially and this is turning into a pretty depressing Valentines Day and weekend. There is SO much to do to get the house sold and we just can't afford to do it all, nor can I keep doing it all by myself. We need a miracle to get this house in order and sold and soon. I am not sure how much longer your Daddy and I can handle being in two different states, financially or emotionally. I am beat and feeling old and worn out.
Granddad's counts were a little better this month, down for the first time in over a year. Lydia is not doing well, please watch over her and her family. It breaks my heart to know what they are going thru right now. There are also several DIPG children that are not doing well at all, please watch over them and their families. We need a cure to stop this beast. BOY, do I HATE CANCER. It has changed our lives forever. Nothing will ever be the same and right now things are really tough being here alone with 5 kids, Plus Alex away at college and Justin about ready to go overseas again, trying to pack, get rid of "stuff" that has accumulated over the last several years, that we have not had time to go thru for too long and I still can't find the time to go thru it all now, there is just one of me and way too much to do around here and I so want us to be able to move soon and be with your Daddy. He too misses you sooooo much. Justin will be going to CA soon for more training, before he leaves for Afghanistan for a year and we are all scared to death about that. I so wish he was not going this time. It was bad enough having him in Iraq for 13 mos. and we were so hoping he would not be sent over again before his enlistment ends, but no such luck. Luckily, he will get to come home again before leaving, after all. I hate war as much as I hate cancer. I pray for peace. I wish all the fighting would end and people could learn to get along and work together for the future of our children.
I wish that when people visit your site, they would at least sign your guestbook to let us know they were here and that they remember you. Rarely does anyone sign anymore and it hurts that much more. I see the numbers go up still, but hardly anyone leaves their name or a note anymore. I know it has been over 5 years now, but for us, it is still hard and the last 7 years have been hell on earth for all of us and we will never "get over" your going home to heaven too soon.
We are glad you are no longer in pain, we are SO blessed to be your forever family, you touched our hearts deeply and changed us for the better, forever, but we are only human and that side of us misses you still so very much. your smile, your laugh, your AWESOME HUGS, your sweet voice, your love of life, family, all God's creatures great and small, the way you loved everyone 110% and the way you gave your all to everything you did and to everyone you loved. We miss seeing you sitting at your art desk drawing your heart out, we miss EVERYTHING about you. You were and are one in a billion, our hearts, our everything. My soul mate.
We pray we are doing the right thing with moving out of state and that God will send someone to buy this house from us and soon. I honestly do not know how much more of this I can take. I am praying for the strength to make it through this until we are all together in one house, one state again.
If anyone is in our area that has free time, that wants to help with some packing, painting or home improvement projects, we could sure use some help. Or if you just want to come and play with the kids for a while, so I can get things done, that would help too, you have no idea how much I have to get done and there is not enough time, or funds to do it all. I have a TON of stuff I want to donate to Alex's birth sister's children in OK, so if ANYONE is going from Wichita, to OK and would be willing to take SEVERAL boxes of clothes to her, PLEASE let me know. She is about 5 hours from here and I have not been able to go with all I have to do here and I know she could use it and I would rather give it to her, than have to have a garage sale. She is a single parent with 4 kids, so I know she needs this stuff and it is not doing us any good sitting here in boxes taking up space and we can't take all this "stuff" with us when we move either. Most of all, please pray for our family, we need to be together and we so need peace and less stress in our lives right now. We need a new start and soon. we have come a long way, but have a long way to go and we are still dealing with the loss of our daughter, our precious Marissa. We buried ourselves in work for far too long and did not deal with our grief in a healthy way and we have been trying to do that this last year and a half or so, but we still have a lot to work on, but it takes time. We are trying to hold onto faith and hope and keep going for our other children, but somedays it is very hard to believe we will ever have peace and joy again. Well, I have to get back to work on the house, pain or not, things have to get done, so back to work.
Hugs and kisses to my sweet Rissa Ru in heaven........ Mommy (Kim)
XOXOXOXOXOXOXOOXOOXOOXOXOXOXOXOXOXOX........ I love you to heaven and back again, until we are together again, I love you my darling, my sweet, sweet Rissa Ru.
Monday, January 26, 2009 9:26 AM CST Well it is the Chinese New Year now and we are not feeling quite like celebrating very much when children are still being dx with cancers and no cures are being found to give these children and their families HOPE to hold onto.
LYDIA needs prayers, they received some very bad news last week and she and her entire family need our prayers. Please stop by their site at: http://www.caringbridge.org/visit/lydialimeieikomiyashita Lydia was also adopted from China and was also born in Guangdong Province like Marissa.
Little Coleman lost his battle and his family could use some prayers right now.
Please stop by and leave a note, a prayer: http://www.carepages.com/carepages/ColemanScott Coleman touched my heart deeply during his battle with cancer.
Caden White also went home to be with Jesus. www.cadenwhite.com please drop by with words of encouragement for his family as well.
There are too many children being dx with cancer, the list is too long to include everyone, but please keep these children & their families in your thoughts and prayers: Princess Gaby http://www.carepages.com/carepages/PrincessGabysPage, Blake http://www.carepages.com/carepages/BlakeKurtz2004, Brittne http://www.carepages.com/carepages/BrittneArcemont, MarlieKai http://www.carepages.com/carepages/MarlieKaiDodson, Nikki http://www.carepages.com/carepages/nikkiweinberg, Brianna http://www.carepages.com/carepages/BriannaSharp, Carson http://www.carepages.com/carepages/CarsonTerrell, Matthew http://www.carepages.com/carepages/MatthewLeeSprain, Kendrick http://www.carepages.com/carepages/GodissoGoodbyKendrickLittle, Braeden http://www.carepages.com/carepages/BraedenBurgess, Pearce http://www.carepages.com/carepages/PearceRock, Amber http://www.carepages.com/carepages/AmberDugan, and so many more....
I feel guilty complaining about all of our every day stresses when so many children are still fighting this fight. It has been a rough last 6 years since Marissa was first dx though and we could sure use some prayers that someone will come along to buy our house AS IS and SOON, so we can all be together in the same state again. It is getting tough being a single parent to 5 still at home, one in college, one in the Marines that is being deployed again and trying to fix up the house anymore by myself, pack, get rid of "stuff" and take care of the kids, dogs, cat etc. Paying rent and a mortgage in this economy is also taking it's toll on our finances and we feel like we will never be able to find and buy a house there the way things are going. We have listed by owner, but have not yet listed with a realtor, as there is just too much to do still to be able to list with a realtor and I am just one person and Steve does not have any idea how long it will be before he can even come home again to help me, he has no other pharmacist yet to cover weekends, so he has been working very LONG hours and weekends too, since the hospital just opened. He loves it there, but I can tell he is exhausted and that he misses the kids and wishes he could come back more often. It is also a long drive and by the time he gets here, it is almost time to go back already. We are trying our best to TRUST in God that we are doing the right thing. I keep wishing that one of those home make over shows would show up at my door step, yeh right, like that will ever happen, but we can dream right? Boy would that be an answer to prayer.
PLEASE keep my DAD in your thoughts and prayers, as his cancer has not been responding to the latest chemo and they have tried everything they have for multiple myeloma. He has been on several chemos and has already had 2 stem cell transplants. He has been out of remission for over a year now.
HAPPY CHINESE NEW YEAR, please pray for our new President whether you voted for him or not, he needs us to be praying for him. Our economy is in bad shape and so many families are struggling right now. So many people have lost focus, hope, morals. If ever we needed GOD in our lives, it is NOW.
PLEASE help us increase awareness of childhood cancers. Let us know when you stop in, by signing the guest book.
Blessings, Kim & Steve, Grace, Jade, Ava, Jalin, Isaiah, Alex, Justin and our Angel Marissa Faith, we love you & miss you so much....one day we will be together again.
Saturday, January 3, 2009 5:43 PM CST Dear Marissa
It is a New Year and I miss you so very much. Your cousin Eric sees Caitlin all the time and Aunt Gina took him to her house the other day and she and I both cried, as you should be with them, they were your BEST friends along with Michaela of course. Eric STILL has a hard time talking about you, he misses you so much. It is hard for Daddy and I to see all these kids growing up w/o you and wishing you were still here with them and with us. The two of you were so close. I wish God would let me see your sweet face, I miss your smile, your laugh, your love of life, family, art, your GREAT BIG HUGS, I could sure use one of your hugs today......Cancer SUCKS and it changes you forever. Nothing will ever be the same without you here. So much has happened since you went to be with Jesus, I cannot believe some of it still, the last 5 years seem like a nightmare and some days, most days, it feels like it will never end. Children are still suffering terribly from cancer, whole families are shaken to their core by it's RATH. Granddad is still fighting, but his counts are not coming down, they will try one more round of chemo next Friday. Little Coleman is hanging on and his twin brother Caden is scared and needs his brudder to be with him here on earth. Coleman and Caden have a joy and love of life like you did and a love for their family like you. I know what Christmas and New Years was like for their parent's this year, as we lived a similar Christmas and New Years in 2002 with you in ICU unresponsive. It was the darkest Christmas of our lives and Christmas is still not the same as it used to be before you got sick. I wonder every year want you would have had on your list for Christmas, I miss seeing you opening your gifts each year. We need this move to a new state I think, but it is so hard with the unknowns, w/o you, starting over the best we can. Please look out for your siblings, that they do well with this move. Some of them do not do well with change, one especially has had it rough lately, missing you, please watch over her, she so misses her big sister. Please ask God for his will for us this next year and that we are doing the right thing for all of us. We all miss Daddy already and want us all to be together as soon as possible. His apartment is like a CAVE!
We have probably seen about 30 houses in person and ours has not sold, nor can we afford to do anymore work on it to help it sell faster. Houses are so much more expensive where we are moving and we really want play space for your siblings to play outside and for the dogs to run. We want an open and peaceful space, as we feel that is what we all need right now, but finding the right place in our budget is proving to be difficult. We will never understand the WHYs of all that has happened this side of heaven and long for HIS return, so we can have the answers and be with you again. I pray for HIS will for all of us and pray that we put all our TRUST in Him, no matter how hard that is sometimes. I pray for a cure for all Cancers, esp. Childhood cancers, as I know how much parents hearts ache for their children who have gone home way too soon. No parent wants to see their child suffer, but it is so hard to let them go and to go on without them.
For those that have never lost a child, I pray you never have to know the kind of pain that we still feel five years later. PLEASE do not say, we will get past it, as you never get over the loss of a child and I sincerely pray you never "get it", but at the same time, I pray for understanding, forgiveness and compassion for those of us that have traveled this road and still carry our crosses every day. We want peace and not chaos in our lives and some days that seems so unreachable, the stress lately has been intense, the holidays are tough still and the upcoming move and the unknowns are draining. I wish we had more control over all of this, but since we obviously don't, I pray we can put all of this in HIS hands and Trust him completely.
We found a peaceful place in the country on 5 acres, that is a foreclosure and not done yet and it will take a lot to finish it, but we all feel we could do our best to make it not just a house, as we have had these last several years, but a real "home" for all of us. PLEASE, God if it is your will for us to make this our HOME, let us find a way to do it all financially with this crazy economy and that our house here sells in time to make it happen. Nothing has felt like HOME for a long time without Marissa with us, like our HOME in Berryton that we built near Topeka. No other house, has had that PEACE we are all needing so desperately. Alex says he could write beautiful music there, I imagine long walks and peaceful nights by the fireplace and gazing at the stars and feeling you close by there, but right now it is feeling impossible to obtain that peace again. You brought so much JOY, laughter and love into our hearts and our family and we have just been going thru the motions since you went home to Jesus...... Will we have peace ever again here on earth? Will our house ever feel like a HOME again? Are we doing God's will?
OH I wish I could still hold you in my arms, I miss you so much my beautiful Rissa Ru. I feel so lost w/o you and am praying that somehow we will find our way the best we can until we are with you again. Mommy
Lastly, I thank God that my nephew Ben got thru his open heart surgery this week w/o a hitch and he even went home 2 days early! He is the same age as Marissa would be and they just discovered his heart defect before the holidays. Way to go Ben! Thanks to all the doctors and nurses who took such great care of him as well.
Wednesday, December 10, 2008 2:20 PM CST Dear Marissa
You are always on my mind sweet baby girl, but lately you have been on my mind even more than usual. Your Granddaddy is fighting his cancer hard and they are ""scraping the bottom of the barrel" as your Granddad said to me today, to help find something else to fight his cancer with, but they are running out of options. His birthday is this Friday, he will be 66. Please watch over him and his doctors/care team and put in a good word for him with God for me.
There are several children and families that need prayers this Christmas season. Please pray for: Coleman and Caden who are 5 today, Caden White, Brittne, Dasia, Nikki, Marli, Andrew, Kennedy, Lydia, Lexi, Carson and all the other children fighting cancer, there are too many to list..... it breaks my heart, as we know what their families are going through and it makes it tough, esp. this time of year.
As you know Daddy has taken a job out of state and our house is for sale. Please pray that it sells quickly and that we can find a house there that we can all fit in and afford and still have a yard for me to garden in and for your sisters and little brother to play in. I know you will be with us no matter where we are. We need to sell the house quickly and we are worried with the current economy that it will take too long, please ask God to send the right family to buy our house quickly so we can all be together with Daddy.
We want to spend extra time with Granddad these next few months, please help us find the time to make that happen, as we know that each day is precious. Please also watch over Grandma Dorothy as this move is going to be hard on her too. we hate having to be so far away from her, but Daddy really needed this new job and we all needed a change so badly, we are praying we are doing HIS will.
Please pray that with time certain people will see the truth and our hearts, it has been a rough last few years for sure and we could sure use some extra blessings right now.
We miss you so much, the holidays are especially hard, but pray we can still make wonderful memories for your siblings the best we can.....
I love you to heaven and back again forever and ever, I am so blessed to be your forever mom.
Love you Rissa Ru, Mommy
Saturday, September 13, 2008 3:44 PM CDT Today, September 13th is National Childhood Cancer Awareness Day. Children all over the country are dying every day from cancer. Those that live deal with life long effects from chemo. Every day. Cancer does not discriminate against race, gender, or social status. Cancer happened to us. It could happen to you, too. Cancer doesn't just happen to one family member. It happens to the whole family. It affects parents and grandparents, and it affects siblings. With one diagnosis a whole family's lives are changed forever. Cancer sucks.
On September 19th we will celebrate what would have been Marissa's 13th Birthday, she would have been a teenager and in middle school this year. Instead, she is in heaven and we are here with our memories, unable to hold her in our arms, so we hold her memories in our hearts and share them with everyone, so that no one forgets our brave, beautiful, loving, talented, daughter, who gave us and everyone she met, so much joy, love, laughter and unconditional love. She did nothing to deserve the suffering she endured from the beast we call "cancer". She loved LIFE, FAMILY, GOD, all living creatures. September 20th will be a bitter sweet day, as we remember it as the 5th anniversary of our precious Marissa Faith going home to the arms of Jesus and also our daughter Jalin's 5th birthday. There are many other kids still here, still fighting... there are many who won their ultimate battle and are now in Heaven with Marissa.
So what can you do? There are a few very easy things!
1. Become a Bone Marrow Donor. Many times the only way to save the life of a cancer patient is through a bone marrow transplant. Now through September 22, The Nascar Foundation is paying the $50 fee so you can sign up for FREE! Be a hero. Be a Bone Marrow Donor.
2. Go out to eat! Seriously! On September 29th Chilis restaurant will be donating 100% of their proceeds to St. Jude Children's Research Hospital. What better way to help cancer research?!
3. Go sign the petition!!! e-mail me and I will send you the link.
4. Check out It's 4 the Kids. Bookmark it and visit often. There are LOTS of ways to help on there!
5. Go to Complete The Cure and watch the videos. For every video you watch sponsors will donate 25 cents to the Children's Cancer Research Fund. It doesn't sound like a lot, but it adds up quickly!
6. Most importantly, spread the word!!! Talk and talk and talk until someone HEARS us.
These facts deserve being posted again and again and again until someone GETS it and changes things so a cure is found.
Did you know?
*Each school day, 46 children are diagnosed with cancer.
*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.
*One in 330 children will develop cancer by age 20.
*Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
*Cancer remains the #1 disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
*In the U.S. almost 3,000 children do not survive cancer each year.
*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.
*Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.
*As a nation, we spend over $14 BILLION per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.
*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximiately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.
Cancer is a terrorist to our children and to their families & friends. A terrorist that kidnaps our children and terrorizes them at every turn. They try and try to fight back and just when they and we think we are winning the fight and the battle is over, they grab our children again and they relapse and the battle starts all over again. Parents stay awake watching their children's every breath, they read all they can about new trials, anything to save our children's lives, we learn how to function on little or no sleep, to keep our children here with us, we watch them suffer more and more pokes, MRI's, CT scans, transfusions, we watch them lose their hair and we see them trying to be so brave as we try not to show them how afraid we are. We try to hold onto Faith and hope, until you cannot bare to see them suffering any longer and we tell them it's ok to let go, words NO parent should ever have to say to their child, but we and many others have and it kills a part of us and our entire family, to let them go. We need an army to fight childhood cancers, so no other parent has to say those words to their child and no child has to be trapped in horror, in their little bodies, from the beast we call "cancer" again.
September is childhood cancer awareness month and September will forever be a painful month for our family. It is only fitting that September is the month we remember and do all we can to let people know about the beast we call cancer, so they will join the army and fight to end childhood cancers once and for all, so September is not a horrible month for another family. So the children fighting cancer now, have weapons to fight back with and WIN once and for all, with no more relapse. So they are not looking over their shoulders, for the beast we call "cancer" to be back, ever again.
We love you Marissa and we miss you and always will until we can hold you in our arms again. Watch over these children and help them fight the beast, We know they cannot fight it alone and neither can their families.
Blessings,
Kim
Forever mom to Angel Marissa Faith Miao Burghart 9-19-95 to 9-20-03
5=4-96 God placed an angel in our arms in Dianbai, China and 9-20-03, He took her home again too soon. Cancer CAN happen to anyone, it happened to our beautiful Marissa and it can happen to you or your child too, if we don't find a way to stop it. Thank HIM for your children every day, do not take anything for granted and pray for good health for your precious children on a daily basis. We are blessed to be her forever family, our hearts are forever changed from having her in our lives and she will be in our hearts forever and one day she will be in our arms again.
Tuesday, July 1, 2008 4:14 PM CDT Rissa, I miss you more than words can say. It has been forever since anyone has even signed your guestbook and we do not want anyone to ever forget you. Justin is back safely from Iraq and is "supposed" to be state side until March 09, but just yesterday he "volunteered" to go back over. Thankfully, they said it was too soon and are sending someone else instead. We thank God and all the angels and saints for watching over him and keeping him safe. I know you are watching over him all the time. He adored you and misses you terribly. Your going "home" to Jesus has been harder on your brothers and sisters than we could have ever prepared for and we are all still hurting so much. We are grateful that you are no longer suffering, but our human side misses you so very much. Losing a child, a sibling is not something you ever "get over", we miss you every single day and always will. Please keep watching over your Aunt Linny and your Granddad. As you know their health is not good at all and we worry about them all the time. Your Granddad is having trouble with his counts and they continue to rise. It has been 4 years since he was dx with his cancer. Lisa's dad is up in heaven now and I am sure you have met him. I am sure he is enjoying being with you, as I know how much he loves Ella and I am sure you remind him of her every day he is in heaven. I am glad he has you with him. You have always been so loving to everyone you meet. Please watch over Lisa and her family and pray for them. I know how much they are missing their Dad and Grandpa, as we miss your Grandpa Herman. We wish we could be there for them, as they were there for us when you were sick and when you went home to Jesus, but we will always have them in our thoughts and prayers. We are so very blessed to be your forever family, you changed our lives forever. I thank God for the time we had, even if it was WAY too short. Please watch over Jade too, she misses you so much and she has been struggling with your not being here on earth. Visit her in her dreams if you can. Please also watch over little Maria's family, they need God's prayers and to really feel His love right now.
We love you precious Rissa Ru, forever and always, Mom, Dad, Justin, Alex, Grace, Jade, Ava, Jalin and Isaiah
If you are reading this and want to make the difference in the life of a child waiting for their forever family in China, please go to the Love Without Boundaries, E-Bay store and make a purchase, you can literally give a child hope at LIFE and living and HOPE in finding their forever family and learning of HIS LOVE, with each purchase you make. Marissa Cards are Item number: 190217341566
You can also help other children with DIPG's by donating to Pediatric Brain Tumor Research.
Please pray for a cure for all brain tumors, they have to find a cure to end this beast from taking away our loved ones too soon. We will not give up Hope that someday there will be a cure for these beasts. We will never lose our Faith, as we know that all things are possible if you Hope and Trust in the Lord.
New background: Red for the love in our hearts for you, White for your innocent heart and soul and purple for the precious gift of you in our lives.
united we all stand together for a cure to be found for all cancers.
Wednesday September 19, 2007 11:08 CDT HAPPY BIRTHDAY RISSA RU, WE WILL LOVE YOU FOREVER and SOMEDAY WE WILL HOLD YOU IN OUR ARMS AGAIN. YOU WILL ALWAYS BE IN OUR HEARTS.... 12 years ago today the most beautiful Angel was born in China and we were blessed to be your forever family 7 1/2 mos. later. You changed our lives forever and we will forever be blessed to be your forever family. You are one in a billion for sure, you are our shining star, our hearts, our everything. You made our world sing and everyone you met felt your love of life, family and friends. Happy Birthday sweet Angel.
We love you Rissa Ru, forever we are blessed to be your parents and family…….
In loving memory of Marissa Faith Miao Burghart 9-19-95 – 9-20-03
Rec’d into our arms 5-4-96 in Dianbai, China, forever she will be in our hearts……
Every child deserves to know the love of a forever family, no matter the circumstances of their birth, the color of their skin, their gender, or whether they have a special need. Every child is a precious gift sent from above to light our hearts throughout our lives.
New photos of our family in the photo section. If you would like to see some of Marissa's art work, please e-mail and let us know. Love Without Boundaries, also has notecards for sale with her artwork to help orphans in China, find the link to LWB below.
God Bless you all........The Burgharts
Tuesday, September 19, 2006 5:40 PM CDT HAPPY BIRTHDAY SWEET ANGEL! Marissa Faith Miao Burghart
Today would have been your 11th birthday. Oh, how we miss you. None of us can believe that you have been gone from us here on earth for 3 years. Tomorrow will be 3 years without you in our arms and Jalin will be 3 tomorrow as well.
They say it gets easier with time, but we know that it doesn't get any easier at all. We will always have you in our hearts, but our arms still ache to hold you close.
Mommy and Daddy both miss running our fingers through your beautiful hair, we miss your smile, your laugh, your beautiful art work, your love of life and your wonderful sense of humor. I just asked Daddy to bring home your favorite mushrooms from Jackie Chans. They have been on my mind all day today, thinking of you and your favorite things.
Jade will be 8 a week from tomorrow, the same age you were when you went to be with Jesus, just one day after your birthday. September is such a hard month for us to get through. We think of you every single day and will miss you until we are all together again. Jade misses you so much. You and Jade were both so close. Losing you has been so hard on her and now she is scared about Justin being in the Marines, as we are as well.
Please watch over your brother, as he goes to Iraq in February with the Marines and keep him safe from harm. He is trying to be brave, but we know he is scared too.
I am reminded today of the Red Thread Story: An invisible red thread connects those
who are destined to meet regardless
of time, place or circumstance.
The thread may stretch or tangle
but it will never break."
We know that our Red Thread is just stretched for now and someday we will be together again. That Hope keeps us going one day at a time, until we are able to hold you in our arms again. We love you to the heavens and back again, you are our everything. We love you, Rissa Ru.....
Sunday, April 23, 2006 1:24 PM CDT HEllO from the Burgharts
I am sorry it has been SO long since we have updated Marissa's page. I have honestly tried many times and never could seem to finish or find the right words to say.
We have been very busy these last couple of years, but the pain is still so strong and with us each and every day. Our hearts and arms still ache for Marissa. We will miss her until the day we are with her again in heaven with Jesus. Just like I still miss my only brother, Phil, who died in a car accident, 22 years ago tomorrow.
We have been blessed with two precious little girls since Marissa went home to be with Jesus. Ava Maria RaeXian joined us from China just before Christmas 2004 and Jalin (JAY LYNN)Philicia AiQian joined us on August 1st 2005, also from China. Ava is now 3 years old and was born with a club foot. She has endured lots of drs. appts. for stretching casts and botox injections, but nothing slows her down. She is so much fun and she has brought so much laughter back into our home and hearts. God and Marissa knew we needed this precious little girl in our lives. Jade says all the time: "Mommy, I am so glad that we have Ava." Ava keeps us all sain and focused on enjoying life the best we can, as she is full of life, so much like Marissa, it is unreal.....little things she does remind us of Marissa all the time.
Jalin is a miracle: She was listed as having mid-level deafness in her left ear, she had a birth mark on her face and an unbilical hernia. She was born on the day that Marissa went home and her Chinese name means: Life, Love, proceding forward thru the ashes......When we got her, she had lost SO much weight from her last photo and we knew something was not right, but no one would listen to us. She would not hardly let us touch her, she did not know how to be held, she shook all the time and would scream, I mean scream, not cry, for hours on end and nothing would stop her. We were scared to say the least and did not know if we had the strength after losing Marissa to face possible neurological problems, but when it came down to what to do, we had 3 choices and 2 of those choices would have meant sending her back to the orphanage and a very uncertain furture if any and we knew this child needed someone to help her, so somehow God gave us the strength to bring her home. When we arrived home, she could not eat, chew, swallow well at all and we had to go back to basic thin baby food and gradually teach her how to chew and to help her overcome her constant drooling. Jalin was 23 months old when she came home, same as Ava when she came home and as different as night and day in development. Jalin was much more like a "maybe" 9 month old in all areas and could "barely" walk. After little progression in her development, speech therapy, lots of working with her at home, we asked for an MRI to see if something was wrong. After several days, we finally got the results and she has mild cerebral palsy. We began to beaf up our working with her and she eats most everything now, as long as we make sure to keep things in small bites, she drools very rarely now during the day, but probably always will at night, she is putting 2 word sentences together and really trying to repeat what we say to her. Her vocabulary has really grown this past month for us, but she rarley says anything when at speech therapy. She follows commands most of the time, screams only when her schedule is off, so we are home and bored a lot of the time, as she just can't handle change, but we will be working on that this summer. We believe that she is very bright, as she is an amazing manipulator. She is bonding more and more to all family members and is shaking less, especially when we remind her to relax. Her walking has improved greatly, she still cannot run, but she is walking faster. She can feed herself some things now. She can go up and down stairs. through all the testing, we learned that her hearing is perfect, but we had already figured that out long ago...she is just good at shutting the world out when she is upset and her birthmark was removed in China sometime before we got her. She has finally put back on the weight we know she had lost before we got her and is looking like the little girl that we saw in the photo we got just before traveling to China, not sure when it was taken. She will be ok with time, love, lots of patience etc.... she is our daughter and she needed us to give her a chance.
Justin Phillip has joined the Marines, we miss him terribly, he is at boot camp in San Diego, Alex will be 16 this week, has a girl friend, Jessie, who is here often, if he is not at her house, he is still an honor student, plays violin and bass guitar, is on the tennis team, Grace is 8 and will make her First Communion on May 7th, Jade is 7 1/2 and no longer wants her hair like Rappunsal and asked me to cut it to her shoulders and it is SO cute on her short. Grace now wants her LONG hair, cut short for summer too, but I told her she had to wait until after her 1st Communion, as I want her hair long for her photos.... silly, I know. Jade is doing very well in school and Grace has improved greatly in the past 4 weeks.
That is about all we have been up to other than me still working to help families adopt, about 40-60 hours per week, Steve still working at Prairie View Hosp 40 hours per week and helping me at HIS KIDS, as often as he can. We are trying to hire someone to help, but out tiny budget can't do that right now...
My Dad finished his second stem cell transplant earlier this year and he is doing VERY well. He is waiting for some more tests, but one showed him to be in remission, or as close to that as he can be, which is GREAT news!
Linda, Steve's sister, continues to battle with heart and lung issues, but other than that her cancer scares are now ok, for now and hopefully forever.
My dear friend Lisa, who was Marissa's kindergarten teacher and who adopted her own daughter from China in June of 2004, little Ella, got bad news last week that her Dad has a grade IV glioma brain tumor now, but they are waiting for the pathology report for sure. We HATE brain tumors and could really use some prayers for her Dad: BRUCE, and her family right now. This is just horrible seeing someone we love so much, going through this, after she went through all of this already with us and Marissa. Lisa heard the words from the Surgeon, "Glioma" and knew it was bad... PLEASE pray for them........and for everyone diagnosed with a brain tumor, that CURES, WILL be found and soon.
Marissa loved family and adoption and her love of these things is what keeps us going each and every day, to try to make a difference in another child's life and for another family to know the joy that she gave us, it is too important not to.....there are thousands of orphaned and abandoned children in this world that deserve the chance to know the love of a forever family. Our children are our greatest Joy. A child will change your lives and your hearts forever....
Blessings from the Burgharts, in Kansas
Sunday, September 19, 2004 12:03 AM CDT Sunday, September 19, 2004 11:32 AM CDT
HAPPY BIRTHDAY MARISSA!
This is your first birthday in heaven and your mommy and daddy and sisters and brothers miss you so very much. The pain is still so deep and we wish we could all be with you today to celebrate your special day, but we are glad that you are free of the cancer, the pain, free from being trapped and I know how hard that was for you. For you were always such a free spirit, like a butterfly floating in the air, or the horses running free. They will forever remind me of you and your love of life. Daddy is at church with your brothers and sisters now, I stayed home today as I knew I would just cry through the whole mass and I just needed some alone time to pray today.
We will be having a birthday cake today and of course it will be purple with lots of chocolate, your favorite! We will take some purple flowers and balloons out for you today.
Please watch over your Granddaddy and your Aunt Linny for us. They need all the prayers we can send up for them right now. Help Granddaddy get stronger as he goes through each round of chemo. He starts round 3 tomorrow. Tomorrow will be a hard day around here. I can hardly type this through the tears. Oh how I miss you, your smile, your laugh, your beautiful face that lit up the room and my heart.
As you and Jesus know there will be a new little one joining our family very soon and I ask that you please watch over little Ava Maria until she is home with us, hopefully in November. And on that amazing thing that happened yesterday, if it is God's will, give us a sign that this too will be somehow by the Grace of God. No one will ever replace you, no one ever could. We wouldn't even try. It was a good thing to see yesterday that something good happened far away on the day you went home to be with Jesus. It made my heart smile at least a little and I could not stop the tears. Thank you and thank Jesus for sending me that e-mail yesterday. I love you to the moon and back again, I love you all the way to heaven and more. My Darling Rissa Ru, Happy Birthday sweet Angel of mine. I love you forever, until I see you again and hold you in my arms, you will be in my heart always.
Love Mommy
Help us find a cure for this horrible beast. We will not stop praying that someone will find a cure. We cannot give up, children should not have to keep fighting this horrible tumor. Families should not have to watch their children fight this horrible beast. It is far too painful to even imagine. To read their stories it is like losing you over and over again. Help us find a cure. Please donate to Pediatric Cancer Research for Brain Tumor Research with St Jude's or someone else.
In honor of Marissa's Birthday:
Remember Adoption! There are hundreds of thousands of orphaned children around the world, who only want a family to love them. We can change the world, one child at a time. One child will change your life forever! Marissa touched so many people in her short life on earth and we are so grateful to have been her parents. She was and always will be our Angel sent from Heaven to change our lives forever and to make our hearts sing! Won't you share your life with a child? http://www.hiskidsadoption.com
hiskids@direcway.com
Tuesday, June 22, 2004 7:18 PM CDT Dear Friends and Families
For those of you who do not know yet, Kim’s dad was diagnosed with cancer while she was in China. Tonight we rec’d some more news from the latest test results and it is not looking very good. The bone marrow test came back today and he has been diagnosed with multiple myaloma stage 3, the worst kind, not stage 2 as we were told earlier. He does have cancer already in his spine, his hip, his femur and his brain. The bones in his spine are already being eaten by the cancer. I was told tonight that he has holes in his spine, hip and brain already in the bones in those areas. They say that chemo might give him 3 years, but it could also be less, and maybe a bit more time. We are not sure how long he has had this cancer, but most likely it has been there for some time now based on the severity of what they found with the bone scans and bone marrow biopsy. He is now unable to work and will have to go on Social Security and Disability. He will begin chemo on the 29th of this month and they will be putting in a port this week for the treatments. I do not know if they are going to do radiation or not, but do know that he will have a bone biopsy after the 1st round of chemo to see if he is responding and they will hopefully be able to do a stem cell transplant with his own stem cells or a siblings stem cells at some point if he continues to respond to the chemo. I am sorry but I do not have all the details yet. He has sold his home, but does not know yet where they will move to. He is currently in MN and was to get married in July and was to move to Atlanta, GA for a new job. He is now unemployed and will not be able to take the job in Atlanta as planned. I am not sure what they are going to do. All I do know is that our family, especially my dad, could really use some prayers right now. I am not sure how I can go through this again. My dad’s name is John for those of you that like to pray with a name.
We are also in need of prayers for Steve’s sister who has had heart problems for some time, but has been getting worse. She is on oxygen 24 hours a day now and she is very weak. She has been trying to transfer with her company to a city with a lower altitude than Denver, and there was a meeting in Texas that may have helped her with getting that transfer, but her doctor would not allow her to travel. She is being seen weekly now by her physician, but he still has not put her on a transplant list. Please also keep Linda in your prayers. She may not be able to work much longer either. She is still so young and the only sibling Steve has left after losing his sister Jan to MS last summer, just 2 months before we lost our precious Marissa to cancer.
Please keep our family in your prayers for strength to get through this new crisis. We are strong, but we are questioning how strong. As Mother Teresa once said: “ I know God thinks I can handle it, but sometimes I wish he didn’t trust me so much.”
Thank you for your prayers.
Blessings,
Kim & Steve and family
Tuesday, May 4, 2004 7:17 PM CDT I know it has been a long time since we have updated this site, but it has just been too hard to put into words the depth of emotions, anger, frustration we have all felt these last 7 months since Marissa went to be with Jesus. I have felt way too vulnerable to post my feelings and too afraid of being judged to publicy post how we are doing, how we are coping, how we are feeling.
Each time we read of another child getting worse and losing their battle with this horrible disease, it has been like reliving Marissa's battle all over again. The pain has been too great. But at the same time today is a bitter sweet day for us and I could not let it slip by without posting the letter I wrote for Marissa today. Before I post the letter I want to give you all a brief update. We moved to a new (different) house on March 1st. We are back in the country with more room, lots to do, lots of repairs to keep us busy and less payments to boot, so that has been good. I am finally able to sleep at least a few hours a night, something that was almost impossible to do for months at a time at the old house. It was just way too hard to stay there. It was hard to leave Marissa's garden, that has been the hardest part. I have driven by, and it is really trying to bloom and is beautiful, but we are desperatley trying to duplicate it here the best we can, but the tiller broke and there have not been funds to fix it just yet. In the meantime, we have discovered little purple wild flowers that pop up everywhere in our field and we know that Marissa has sent them from Heaven as she wanted purple flowers everywhere. (Although it pains me to mow them, I know they will keep coming back) I still cry nearly every day and problably always will. Here is the letter I wrote to Marissa:
EIGHT YEARS AGO TODAY
Eight years ago today, an angel was placed in our arms.
Little did we know then, how much she would change our lives.
Eight years ago today, God sent an angel to us that would forever leave footprints on everyone’s hearts along her way.
Who would have ever imagined how someone so small could make such a big impact in so many people’s lives all over this world.
Eight years ago today, we were given a shining star.
Who would have imagined then, all she would have to suffer here on earth in order to teach the world to open their hearts to a child that needs a family. Family meant everything to her and she wanted all children to have the unconditional love that her family gave to her. One child changed our lives forever, she taught us to live, she taught us to love, she taught so many what a gift a child is no matter where they come from, a child will change your lives forever and teach your hearts to sing.
Our hearts are forever broken, as God has called you home, yet rest assured your life will forever be remembered by thousands all over the world. For even in your suffering you gave people new reasons for living their lives to the fullest. You taught us not to take things for granted, you taught us to stop and smell the flowers, to spend time with our children, to love, to listen, to not sweat the small stuff, but most of all, you taught us to open our hearts and our homes to children all over the world, that family is important and each and every child deserves to have a family of their own.
We understand why God sent you, but we will never understand why your time had to be so short, but we are forever thankful to Him for choosing us to be your forever family. I saw the Passion and saw Mary’s pain as she watched her child suffer. I understood as a mother what that meant and how heavy a cross that was for her to bear. I understood as a mother what a gift her child had been to the people here on earth. I understood the sacrifice, I understood her pain. I understood that sometimes God sends his special angels to teach us how to live, to love. God sends his special angels and they leave footprints on our hearts, that will never wash away.
You are forever with us in our hearts and all around us. In the purple flowers in the fields at our new house, in the sunsets, in the rainbows, in the birds, and the horses running free.
Your life will continue to touch others all over the world. Your life will forever help other children find their forever families, to find the medical care they so desperately need. I pray to you when I know a child, a family is in need and I know you hear me. I know you are watching over all the children that wait.
I will see you in each smiling face as they are placed in their mother’s loving arms. I will hear you in each child’s laughter, as their Daddy carries them on his back, saying giddy up, giddy up. I will see you in arms stretched upwards, saying: “hold me, love me, take me with you. I need a family, I need your love, I need you to make a sacrifice so I can have a home. So you won’t get a new car this year, but I will give you so much more.” I will see you in eyes that sparkle as only a child’s eyes can.
You will continue to teach us how one small child, can change our lives. You will continue to teach us, what a difference each child makes on our lives, on those around us, on the world. You will continue to teach us to help those that wait, to never give up, to have FAITH, to have HOPE. To BELIEVE.
I love you my darling daughter, my forever Angel, my Rissa Ru. You saved my life, you gave me hope, you taught my heart to sing and dance. You gave me more than I could have ever given you. I will forever continue what you helped us start, I will never forget the children that wait. I love you more than life itself. I will forever have your footprints on my heart. EIGHT YEARS AGO TODAY, our lives changed forever. Eight years ago today, God Placed an Angel in our Arms and in our hearts.
PS You too can make a difference, one child at a time.
PPS Please donate to Pediatric Brain Tumor Research programs, so we can continue to hope and pray for this madness to end so that another child, another family won't have to go through what we and many others have.
Also, please do not forget the children that are waiting for their forever families, consider adoption, it will change your life forever. contact us at: hiskids@direcway.com for more information about how you can adopt a child.
Monday, October 27, 2003 8:29 AM CST Dear Friends and Family
I apologize for this being so late and for it being so long, but this is what happens when the flood gates open and you can finally try to put to words what you are feeling.
Well it was a month last Monday since we lost our precious Marissa. We have not been able to write lately. It has just been too hard. We all miss her terribly and are all grieving in different ways.
We want to thank everyone that has been there for us over these past 10 months, both physically, via the internet, but especially in prayer. We want to thank the Garcia family for all they did for the fund raiser dinner and to all those that helped, donated items, came for the dinner, or were with us in spirit that day. We want to thank all the families that have prayed for us here in Newton and the surrounding area. The Prairie View Staff, we cannot thank you enough. The families from Keorner Heights Church, where our neighbor is pastor, I know that your church family prayed for Marissa and for our family faithfully for so long. For the U-Turn Youth group at Hillcrest Community Church. For St Mary’s and Our Lady of Guadalupe parishioners, student council and prayer blanket ladies, we thank you for the prayers and support you have given our family. For Father John for always being there for us as we traveled this road. And for all the churches around the world that lifted prayers up for our daughter, we are so blessed. We are so thankful for the Adoption community and the thousands of adoptive parents that have been praying for Marissa and our family, especially the families from the APC List (Adopt Parents China), the Christian Adoption Families, the Dianbai families (Marissa’s sisters, we love you all so much), the Yangjiang Families, HIS KIDS Families, Great Wall, Holt and Harrah Family Services families and Asia Threads families, we thank you all from the bottom of our hearts and know that everyone that followed Marissa’s illness came to know and love her through this site. Whether you met her in person or met her through our story, we know that she touched your lives and because of that we know that you will never be the same, nor will we.
Marissa was one in a billion, times a billion……..she cannot ever be “replaced”, having 4 other children that need us, does not take away the pain, nor does it make it easier to go on. We force ourselves to get through each day for them, but the pain is so real and so intense, it is indescribable. We cannot sleep through the night yet and wonder if we really ever will again. I cannot sleep in the family room, where I spent 7 ½ months caring for her, nor can I sleep upstairs in our room. Marissa gave my life meaning, direction and purpose. I know that God sent her to us to save me from a life of not knowing what I was supposed to do with my life. She showed so many, not just us, how to love unconditionally, to live your life for HIM, to be there for others, especially orphaned children around the world, to appreciate the little things, from the bees, to the tops of the trees, to love all animals, the flowers and most of all to love each other. She had this incredible insight, way beyond her years, as to how the world worked and for all the things God gave us, and to not take those things for granted. I wonder what the reason is that God had to take her home so soon, but we’re thankful for all she taught us, for all she gave to us and to so many others. She is my inspiration, my guardian angel, my precious little girl. I never really knew what love was until she came into my life. Some people only feel their guardian angels presence; I held mine in my arms, ran my fingers through her hair, looked into those big dark eyes and saw the most beautiful spirit I have ever seen. She was one of those people that as soon as you met her you could see her spirit right there in front of you. That feeling doesn’t happen with everyone you meet, it happens with God’s Precious Angels. I pray that those of you who loved her and held her close in your hearts through her story, that you will always feel her spirit and never let that go. Know that the feelings you have for Marissa are feelings straight from God and we know through Marissa that things sent from God are to be cherished, not questioned, not taken lightly, and certainly never forgotten.
We have gone through and are going through periods of numbness, of disbelief, of anger, loss of direction and focus, and many more emotions this past month. I have not gotten through a day without tears and that has actually gotten worse. You may think that it must be getting better, but it hasn’t yet and may not for a long time.
I look at the flowers blooming in her garden that I planted for her last spring and I know that she is FINALLY seeing it in all its glory. There are so many flowers blooming. I had hoped that my Oriental Lilies would bloom one more time before it got too cool, but the second blooms did not make it. She and I had picked those out together and she got to see the first blooms and I was hoping to enjoy the second blooms before winter. She loved the lilies and all purple flowers and wanted them everywhere! Well the dark purple flowers are blooming and there are pink ones everywhere too, along with the pink roses that are prettier this year than last. I wish she could have enjoyed her garden more this summer, but I know she sees it now. She did not get to take her Make a Wish trip to Sea World and Disney, but she is swimming with the Dolphins now. If I can tell any parent with a seriously ill child one thing, I would tell you this: Don’t wait too long until you take that Make A Wish Trip, don’t wait until there is no school, until there is no meetings to attend…. Just GO….take the kids out of school if you have to….when your child finishes treatment and is stable enough to go, GO! If you have a “feeling” that you need to have a celebrate life party for your child, HAVE it tomorrow, do not wait….. I have these regrets and the loss of those memories we could have made together, don’t make the same mistake. Do it today, don’t put off until tomorrow what you need to do today, if you need help putting something together, pick up the phone and ask for help, they will help! Take lots of pictures, cherish every moment. None of us know when God is going to call us home, so appreciate the little things, go for long walks together, stop to smell the flowers, do something kind for someone else…. Love each other……..hold each other……….
Steve and I are going to go with our next 2 families to receive their babies from China. We will leave on November 2nd, we will return on the 12th. Steve and I need some time together to take those long walks, hold hands, have a quiet dinner together, just the 2 of us, discuss the children, to express our feelings, to cry, to hold each other, to grieve, to visit her birth city, to walk on the beach in Dianbai, to listen to the water rushing in, to try to have some kind of closure even though we know there will never really be closure this side of heaven. They say that couples that lose a child have a 400ncrease in the chance of divorce, we do not want to be a statistic. We know that in order to be there for Justin, for Alex, Grace and Jade, we have to be there for each other and for ourselves first. So we are taking this time that we need desperately to spend together.
We will be making some changes here and want you all to understand why…..Our current house is too empty without Marissa, there are just too many memories. It has been one thing after another since we moved to this house and we need some kind of a new start. We are hoping to move to a new house if our house sells. The other kids have been so neglected these last 10 months and the new house needs some TLC but has an “old” in ground pool and we will be able to have some much needed family fun next summer. The difference in the payment is so little with the lower interest rate, or there is no way we could even consider a move, but with so little difference and so much more to do as a family, it feels like the right thing to do for our family. The kids all get to stay in the same schools and they are happy about that. We had to get permission, but that was easy. I am not saying that I will be over protective of the other kids, but I know that we are more protective than before. We want to know “who” the kids are with, “where” they are and if there are parents there, “what” they are doing, all the time and with this house, the kids can have their friends over to our house and we will not have to worry as much about, the who, what, where and why’s, because we will all be together. This is all contingent on the sale of our current house so it will all depend. We have a TON of work to do on this house, it has been neglected too these past two years…..First the move here, Steve’s dad’s illness and death, Marissa’s illness and Steve’s sister’s illness and death, exactly one month apart, cleaning, organizing, repairs etc., have not been a priority around here and it shows…. Now we just have to pray & hope that we can sell this house for what we ask for it, or there will be no way we can go through with the move.
I hesitate to take Marissa’s garden with us, although I want to…. If it didn’t make it, it would be worse than leaving it here….I think I can duplicate most of it again and even have room to make it better, her stepping stone, the only one of the kids that put her hand print in the new sidewalk, will thankfully be able to go with us. I am so thankful that we did not pour a traditional sidewalk. We made a sidewalk from a mold that is like individual stones, like an old fashioned cobblestone type walk.
We would like to ask you to please pray for a couple of our St Jude friends. Bailey Kistner, who has another type of brain tumor and has recently, relapsed, and they are back at St Jude. She and her family could use some extra prayers right now. Her caringbridge site is: www.caringbridge.org/ks/bailey Also, please pray for Mckenzie who has the same type of tumor as Marissa & she has not been feeling too well lately & her tumor may have grown. Her site is: www.caringbridge.org/wv/mckenzie they were also at St Jude while we were there. Remember all the families & children facing cancer right now, they need your prayers. This is the hardest thing I have ever done, I pray their families will have their miracles on this side of heaven.
Marissa, we love you & miss you so very much. I know you are in a better place, but I can’t help but feel that you are all alone, even though I know you are with Jesus, with Grandpa Herman, Aunt Jan, Uncle Phil, Aunt Maddie and Uncle Clifford and your Great Grandpa Willett. I bet you & Grandpa Herman & Aunt Jan are teasing each other & laughing everyday. Children should not be in heaven without their mommies. I miss your smile, your laugh, your beautiful eyes and your gorgeous hair. I miss seeing & you & Micaela after school laughing & playing. I miss your sweet voice & our special kiss we had. I miss my Rissa Rue, my beautiful Marissa Faith, more than words can say. I long to hold you in my arms again. I am so proud of our brave, beautiful, loving daughter….. hold Jesus’ hand tight until we see you again. Ride those Purple horses & smell all the beautiful Purple flowers for us. Heaven has our shining star, we will be together again. Ask him to watch over all of us, we miss you so much, the pain is so great. Look after Jade, she misses you so much. She is sending up pictures and letters to you almost everyday. Alex & Justin miss you too, but it is to painful for them to talk about it right now. Give them strength to learn to talk about you again. Grace is hurting too, but so confused, help her know you are still with us in our hearts, until we meet again one day with Jesus. We will always look for your star, for purple sunsets, rainbows and butterflies…..God has a wonderful artist with him in heaven to send down the most beautiful things for us to see……God thank you for sending us an angel, we are so thankful for the gift we were given, we still wish she was here with us, but know what a gift she was and that we are better for having shared her short life. We know too that she is alive with you and will live E-T-E-R-N-A-L-L-Y!
Friday, September 26, 2003 7:58 AM CDT Marissa's Last week with us.
On Tuesday we ordered the most beautiful cake, with butterflies, horses and lots of purple flowers. Her Granddad sent her the prettiest giant purple butterfly balloon and a rainbow balloon and a beautiful plant. Paul and Michele and their girls sent her a Star named after her from the National Star Registry and the certificate was even purple. It is so beautiful. A wonderful family from the APC list sent her several dark purple star ballons and her Aunt Jill sent her a beautiful teddy bear and more purple ballons. Steve and I gave her a purple bracelet that I had brought home from China right before she was diagnosed. These were some of the last things she saw. We sang Happy Birthday and showed her all the ballons, her gifts and her cake. She was awake off and on during the next few days. We relit the cake each day all week as we celebrated her life. I think we all knew deep down that it was going to be her last birthday and we wanted to make sure that we celebrated every day. Steve continued to read her "The Wind and the Willows" a little every day. She seemed to just enjoy being read to and she knew when we were both with her. She did not like us to be far from her side, where we were pretty much 24/7.
Friends and family came on Saturday morning to help with the local fundraiser. Steve and I had taken turns going over to tell everyone thank you and to eat dinner. The mariachi bands were wonderful as were the soloists. Marissa would have loved it. The dinner was from 11-7.
Several familes had come to the house to see her and she was trying her hardest to wake up to see them all and had opened her eyes quite a bit that morning and early afternoon. She knew they were all here. Steve and I had just both gotten home when it was again time to suction her. It would be the last time. We knew something was different this time. She was having a hard time breathing again, like she had on Wednesday and Thursday. She just had no more strength left to fight. She seemed so much weaker. It was time to let her rest, even though our human side wanted to keep fighting for her to stay here with us, we knew we had to let her go. So we picked her up and held her and told her our good-byes and that we would love her forever. We were both with her in the family room, as family and friends were in the front living room and out in the front yard. Steve and I spent time with her just holding her and than we gave her a bath and dressed her before calling hospice or the funeral home. We needed that time alone with our daughter. I think Kelly's sister Robin went over to the fund raiser to break the news as gently as she could. I was so worried about her friends, especially Michaela. They were very close and had been in the same class since Kindergarten. Justin and Alex came in to say their good-byes. A neighbor had had Grace and Jade and when she arrived I tried to keep them out, but they wanted to tell Marissa good-bye so we let them in for a few minutes, than Cindy took them to her house to spend the night. This was a good decision as it was not easy to get through the rest of the night. It was hard making phone calls to let everyone know, I had sisters that were on their way to the dinner when Marissa passed away and they were so sad that they had not been here sooner. They all went to mass together as Steve and I waited for Hospice to get here. We were thankful that they were able to take all of her equipment for us and they were going to get everything back to where it belonged, St Jude, Home Healthcare and Hospice so that we would not have to deal with it.
The rest of the weekend was spent making arrangements for the services. We opted to have everything on Tuesday instead of Wednesday even though that would not give people enough notice to be here with us, but we felt it was best for the boys and our girls not to drag things out any longer than we had to. They have been through so much these last 9 months that they needed to have some sort of normalcy, if that is possible when you lose a sister they all loved dearly. This proved to be the hardest thing we have ever done and we pray we never have to do this again. Children are not supposed to go before their parents. My Dad drove to Topeka to get prayer cards for us, as the funeral homes do not make them here and none of our families had ever not had them for their loved one. Of course Dad knew just which one I would pick and the perfect prayer on the reverse. The service was very nice from what I can remember and Father even wore purple in her honor and made sure that the alter servers wore purple too, it made me cry, it was so wonderful that he did that for her and for us. My sister put together a little program with her picture to hand out to everyone, it was so beautiful. We miss her so much and are still crying over little things everytime we turn around. I still can't believe she is gone. But she will always live on in our hearts and our memories. The house is so empty without her smile, I do not know how we can stay here, it just hurts too much. We are thankful that she is no longer in pain, but it is so hard to go on without her. She was such an important part of all our lives and we will never be the same for having shared her short life. She was such a wonderful, beautiful, special child. Her light will never go out in our hearts. We know that she is with Jesus and he has one very special Angel with him in heaven. Sundays comics had a perfect Family Circus: It had Billy and Dolly looking up at the sunset saying: Only the best artists in heaven get to paint butterfly wings and sunsets! How perfect for that to be in the Sunday morning paper! We will never look at butterfly wings and sunsets without thinking of our sweet beautiful Marissa Faith Miao..... We want to thank everyone of you for the continued prayers, support and offers to help. God Bless you all, Steve, Kim, Justin, Alex, Grace & Jade and our forever Angel Marissa Faith Miao Burghart.
Several have asked for the addresses for the Memorials:
1. Memorial & Honor Program-Brain Tumor Research-Marissa Burghart
St Jude Children's Research Hospital
501 St Jude Place
Memphis, TN 38105
1-800-873-6983
2. Newton Community & Healthcare Foundation
Marissa Burghart Art Scholarship Fund
600 Medical Center Drive
P.O. Box 548
Newton, KS 67114-0548
316-804-6006
3. Half the Sky Foundation
Marissa Burghart-Dianbai Orphanage Fund
541 Vistamont Ave
Berkley, CA 94708
510-525-2077
4. HIS KIDS Ministries, INC.
Marissa Burghart China Adoption & Orphan Relief Grant
10 Cedar Drive
Newton, KS 67114-4338
888-831-1124
From the Guestbook/Rememberance Book we chose:
Little Angels
When God calls little children to dwell with Him above, We mortals sometimes question the wisdom of His love. Perhaps god tires of calling the aged to His fold, so He picks a rosebud before it can grow old. God knows how much we need them, so He takes but a few To make the land of Heaven more beautiful to view. Believing this is difficult still somehow we must try, the saddest word mankind knows will always be "Goodbye". So when a little child departs, we who are left behind must realize God loves children, Angels are hard to find.
From her prayer card:The cover is the famous print of a guardian angel and 2 children walking over the bridge.
God saw she was getting tired and a cure was not to be. So he whispered "Come with me". With tearful eyes we watched her suffer and saw her fade away. Although we could not bear to lose her, we could not bid her stay. A golden heart stopped beating, hard working hands laid to rest, God broke our hearts to prove to us, He only takes the best. Author Unknown.
Please remember to pray for all the other children fighting cancer.
Monday, September 22, 2003 8:43 AM CDT Services and Memorial information:
Visitation at the funeral home will be Monday from 12-5 PM at Broadway Colonial Funeral Home 120 E. Broadway, Newton, KS 67114 316-283-4343
Rosary will be at 7 pm Monday night at St Mary's Catholic Church, 106 E. 8th Street (8th and Main) Newton, KS 67114 (Where Marissa will lie in State)
Mass will be at 10 AM Tuesday at St Mary's Catholic Church, Burial to follow at St Mary's Cemetary, Newton, KS, please do not wear black, if you have something purple, Marissa would love it!
Lunch following at the church, if you will be attending the lunch,please let us know so we can give the church an approximate count. You can just e-mail us ASAP. Please feel free to attend the lunch,
especially those of you coming from out of town.
Memorials will be set up tomorrow at the following, in lieu of flowers:
1. Half the Sky Foundation- Marissa Burghart Dianbai Orphanage Fund
2. Newton Community and Healthcare Foundation-"Marissa Burghart Art Scholarship Fund"
3. St.Jude Children's Research Hospital-"Memorial and Honor Program-Brain Tumor Research" in Marissa's name
4. His Kids Ministries, Inc. -Marissa Burghart -Orphan Relief & China Adoption Grant.
Thank you all for your outpouring of Prayers, love, support & comfort. Kim, Steve, Justin, Alex, Grace & Jade and our Forever Angel Marissa Faith Miao 9-19-95-9-20-03
Marissa: You have touched more lives than we will ever know and our hearts are forever broken, but we are so blessed to be your forever family,you are forever in our hearts and we are so much better people for having been blessed to call you our own. You have given us so much incredible joy, you always loved everyone 110% and more and you gave everything your all! You taught so many how to love unconditionally, you inspired so many to adopt a child. You are the bravest, most courageous child We have ever known. Never could we have imagined how many lives one tiny little girl could touch. Your smile lite up the room always wherever you went and the heavens shine brighter with you there. We love you sweet Angel girl and our arms will forever ache to hold you again......you are free at last of the pain.... hurt no more our beautiful,special little girl.....fly free like the birds, run fast as the wind, let your spirit soar free at last...... Enjoy the horses, the butterflies and the purple flowers and we pray that they had Chinese buffet waiting for you at the pearly gates, with lots of mushrooms too! Jesus has a very special little girl with him in Heaven, until we meet again, you will be in our hearts forever......You will always be the light of our lives. Shine on for eternity!
Saturday, September 20, 2003 8:59 PM CDT Dear Friends and Family
This will have to be short for tonight as it is just too hard to find the right words tonight, but we wanted to thank you all that have stopped by, left messages, send out thousands of prayers, called our prayer pager etc.....
Our sweet, beautiful Marissa passed away this afternoon in her daddy and mommy's arms to be with the Lord at 4 PM. She was surrounded by friends and family over the past few days.
Services will be Tuesday at St Mary's Church in Newton, KS at 10AM. I will give more details later. And give more details of our last few days with our precious daughter. All our love, In Him, Kim, Steve, Justin, Alex, Grace and Jade and Our FOREVER ANGEL MARISSA FAITH MIAO BURGHART, the most beautiful loving child anyone could ever ask for. She is such a precious Gift to so many and for some reason we may never know until we see her again, the Lord wanted her back home with Him. She was found in China 8 years ago today and she is now at home in heaven with no more pain. She will live in our hearts forever and we are forever blessed to call her our daughter.
To Our Angel: We love you to the heavens and back again a million billion times, sweet Rissa Ru, our shining star... fly home baby girl fly free......
Tuesday, September 16, 2003 8:33 AM CDT Dear Friends and Family
First of all, I want to thank you all for understanding our need to get all we were feeling out into the open. Second I want to say something about Faith and Hope. I knew from the beginning of Marissa's illness that God would be by our side no matter what. I have always said that Marissa is in God's hands and if it is HIS will for an earthly healing, than she would receive it. We have both tried to make all of our decisions regarding Marissa's care prayerfully. I have always felt the Holy Spirit guiding us in every step through this difficult journey and we have never stopped believing in Miracles. We have always known that through HIM all things are possible. We actually have a CD with that song on it, that a dear friend sent to our girls. That is my favorite song on the entire CD. We began this journey saying that without Faith and Hope we had nothing and we are so thankful that He has given us all the gift of Hope. Hope is a gift that comes through Faith. Hope is a beckon of light to light your way even in the darkest hour. Our fear, our love for Marissa, our not wanting to see her suffer if she is not going to have healing here on earth, is what has pushed us to the breaking point. No matter how much we have prayed over the last couple of weeks, I was just not getting any clear direction like I usually do. Last night I was awake with her from midnight until about 4:45AM, suctioning her and trying to losen the gunk in her throat. I prayed to God and asked him to let me know that he was still listening to our prayers. I turned the TV on and turned it to EWTN, and the lesson was on Faith and Hope. God answered my prayers in a BIG way, he knew that I needed to hear that lesson. Father even talked about times when we all, including himself, get angry with God and he suggested that we read psalm 88. So I pulled out my New Testament Psalms & Proverbs from under my pillow and opened it to Psalm 88. What a perfect answer to what my spirit needed. First of all I needed that reassurance that He was still listening and secondly I needed to know that it was ok to be angry. I will write it here for all of you.
O Lord God of my salvation, I have cried day and night before thee: 2 Let my prayer come before thee; incline thine ear unto my cry; 3 For my soul is full of troubles: and my life draweth nigh unto grave. 4 I am counted with them that go down into the pit: I am as a man that hath no strength: 5 Free amoung the dead like satan that lie in the grave, whom thou rememberest no more: and they are cut off from thy hand. 6 Thou hast laid me in the lowest pit, in darkness, in the deeps. 7 Thy wrath lieth hard upon me, and thou hast afflicted me with all thy waves. Se-lah
8 Thou hast put away mine aquaintance far from me; thou hast made me an abomination unto them: I am shut up, and I cannot come forth. 9 Mine eyes mourneth by reason of affliction; Lord, I have called daily upon thee, I have stretched out my hands unto thee. 10 Wilt thou shew wonders to the dead? shall the dead arise and praise thee? Se-Lah
11 Shall thy lovingkindness be declared in the grave? or thy faithfulness in destruction? 12 Shall thy wonders be known in the dark? and thy righteousness in the land of forgetfulness? 13 But unto thee have I cried, O Lord; and in the morning shall my prayer prevent thee. 14 Lord, why castest thou off my soul? why hidest thou thy face from me? 15 I am afflicted and ready to die from my youth up: while I suffer thy terrors I am distracted. 16 Thy fierce wrath goeth over me; thy terrors have cut me off. 17 They came round about me daily like water; they compassed me about together. 18 Lover and friend hast thou put far from me, and mine acquaintance into darkness.
Marissa has been having really LOW temps instead of high temps, the last 24 + hours, her posturing is so much less in her arms that her left arm has been bent since yesterday. She has been alert, but still sleeps alot off and on. She tried to smile for her Uncle Dave (mr mirugla hehe) and Aunt Gina this weekend and boy do her eyes get bright when she sees those that she loves so much, come to visit her. (Mrs Kelly, Mrs Houser and many others) We are going to order a cake this morning and celebrate her birthday tonight with family and a few friends. I do not know yet what I will give her, but we will make tonight a wonderful celebration. Her cake will have horses, butterflies and purple flowers, if they can get it done for us in-time.
We will carry on with this journey and keep trusting in the Lord with all our hearts even if our hearts are breaking, we Trust in Him to show us the way with hope held tight in our hearts to light the way. God Bless you all and thank you for being there for us in this most difficult time.
Kim, Steve, Marissa Faith, Justin, Alex, Grace & Jade
Saturday, September 13, 2003 5:50 PM CDT Dear Friends and Family
We are sorry it has been so long between updates, but we were taught that if you do not have anything nice to say, than don't say anything at all. Well, it has been one of those weeks, that you would rather not ever have. Marissa had been doing so well, until Wednesday. There is just something about Wednesdays that have not been good for her the last three weeks. Wed. AM early she began to have seizures again and she had several over about 2 1/2 hours. Steve took the day off, he just had to. None of the seizures were very long, but they were close together and it was very scary for us and she was well aware that something was happening to her. She would look right at us when she would come out of each seizure and we would ask her if she could hear us. She was alert and responsive, but obviously worn out and frightened as were we. No parent should ever have to go through what we have this past almost 9 months now, but unfortunately we know that we are not alone. Wednesday was also not a good day for another little one that we have grown so fond of. Sweet little Julia got her Angel wings on Wednesday. She had the same tumor as Marissa and was diagnosed the day before and so we have felt a strong connection for some time. Plus the fact that both of them have been struggling with some of the same things these past few weeks. Steve and I now know that we may not have much longer with our precious daughter Marissa. Of course we want to believe and hope and pray for our Miracle, but we know that we may not get the miracle we have been praying for. This is just too painful to write about, let alone talk to anyone about. We had to tell our daughter Wednesday after the seizures that she did not have to fight this any longer, if she wanted to let go she could, but she is hanging in there. We had to face the fact that we may very well have to be talking about things no parent should have to talk about....This can't be real, please tell us this is a bad dream. We do not want to be angry with God, but we have to admit that we are very angry, scared, confused, hurting and terrified, and so much more as are our other children. None of us want to see Marissa suffer anymore from this blasted tumor if she is not going to get better, but we do not want to give up hope or give her up either. She is our LIFE, OUR WORLD, OUR PRECIOUS LITTLE GIRL, who we prayed for for so long and who has never hurt anyone, loves everyone, loves life, school, nature, God and everything and everybody around her. She's an answer to prayer and so much more, than we ever dreamed, to be going through this with her now, just seems so unreal and cruel, unfair is an understatement. Friday is Marissa's birthday, she will be 8 years old, we do not know if she will be here to celebrate it with us or not. What do we plan, and how, for her special day? Please God let us celebrate her birthday this week, please do not take her from us, but please do not let her suffer anymore. This is just too hard. They have to find a cure for this thing, there are just too many families suffering from this thing, not knowing what tomorrow holds for their beautiful child. My nephew and many other friends and family members will not even talk about Marissa's illness it just hurts too bad. So many people love her and have just been in shock from all of this. It just seems so unreal and unfair. Not our Marissa we say, but not any child either.... no child should have to go through what our brave daughter has. How do we continue to pray? What do we ask God for? Where is our miracle, where is the cure, the healer? Why do we all feel so alone and abandoned? Marissa was already abandoned once before on a little street in China, less than a day old and I can honestly say that I now know what that feels like, as we feel that we have been abandoned. How can so many children be left to suffer from incurable cancer and disease still in 2003? It is not fair for a parent to have to tell their child that they do not have to fight this anymore. No parent should have to watch their child work so hard to fight this thing, only to suffer a bleed that made things so much worse than they were already. To watch your child’s feet and hands posture and twist like Jesus'feet & hands nailed to the cross at 7 years old, is horrifying. He was a grown man and she is just a baby. When will this nightmare end? When will no child or parent have to suffer from this blasted tumor ever again? Please tell us how to hold onto faith and hope?
Please do not tell us there is a reason for all of this, because there is no reason for a child to have to suffer as these children suffer from this horrible disease. No parent should have to watch their child suffer from an incurable disease to watch them fight so hard to live. It is impossible to understand the fear, the pain, the anger we feel unless you have had the same cruel fate to have walked in our shoes. We still believe in God, but are having a very hard time trying to understand any of this. From a Mommy and Daddy in Kansas, who just want their daughter back, from Her big brothers Justin and Alex who adore her and just want her to be well and her to be her wonderful, happy, smiley, funny self again, her little sisters Grace and Jade just want to be able to play with her again. Please pray for strength for all of us. Amen
PS A Benefit dinner will be held on Saturday September 20, 2003 at Our Lady of Guadalupe Church 421 S. Ash, Newton, KS from 11-7. Pork, Chile, Beans, Rice, Tortillas, Dessert and Drink $7 per plate, Hot Dog, chips, Dessert, Drink $3 per plate. Entertainment from 12-4PM, raffle, silent auction and bake sale are also planned. For more information call Cindy Reyes 316-283-4525. Call in orders 316-283-9838. Thank you for your support, friendship and prayers.
Monday, September 8, 2003 6:57 PM CDT Dear Friends and Family
Marissa was more awake and alert today. She even tried to smile a little today. We got a pediatric hospital bed through hospice and that will save our backs. They are also going to try to get us a cooling blanket like she had in the hospital and that will be alot easier when her fever spikes. One more piece of equipment, like we need any more.
Steve and I have had a very emotional weekend. It is so hard to see our little girl so sick and be so unsure of the future. All we can do is take one day at a time and keep trusting in the Lord. I can't even begin to explain how hard this has been on all of us. Our oldest are hurting so badly and they are so afraid. They love Marissa so much. Our youngest can't understand any of this and want their big sister well again so badly. They keep asking me when will Marissa walk again, when can she draw with us again. Is she going to get better mommy? It is so hard to know what to tell them. We are going to be saying a Rosary each day for Marissa and want to ask those of you that want to pray with us, to join us at 7:30 PM CST each evening, here or from your own home. Please pray with us for Marissa's complete healing and for strength for our family. We also want to thank God for the Hope, only He can give us. God Bless you all, Kim, Steve, Marissa Faith, Justin, Alex, Grace & Jade
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 be faint. Isaiah 40:31
Friday, September 5, 2003 9:08 PM CDT Dear Friends and Family
Marissa's temps have been much more stable the last couple of days. She has slept alot, most likely to make up for being awake from 3 AM to almost midnight on Wednesday. Anyway, this afternoon she could bend both her legs and her arms for several hours. I spoke to her doctor and the doctor thinks we are crazy to check her temps every hour, that we need our sleep and it won't matter anyway. We don't care if we have to stay awake 24/7, we will do everything we can possibly do for our daughter. I am seeing RED! I hesitated to even write about today's conversation. We know that God is still with us through this and we will do all we can for our beautiful daughter and that includes making sure that her temps stay down, which will in return help prevent any additional seizures. We learned today that Hospice will come to help us and they will not make us sign a DNR, as the hospital had told us. They will come to talk to us tomorrow morning at 10 AM. I will post later how the meeting goes and what they will be able to do to help us. Marissa's best friend Michaela's family is planning a fund raiser for Marissa on Saturday September 20th, the day after her birthday,at Our Lady of Guadalupe Church in Newton. We will post more details later. I am overwhelmed by their desire to help us. They are a wonderful family. I am fighting back tears just thinking of all they have already planned. I do know that there will be food, entertainment, a raffle etc. Steve had to go back into work as they had several new admissions that need meds filled, so I have to make this short tonight. Just wanted to give a quick update and ask you all to keep the prayers coming. Please also remember to pray for all the other kids with this horrible tumor: Cheyenne,Christopher, Julia, Mackenzie, Maddie, Jake, and many others....Let the Love of Our Lord sustain them and give them strength. May they never give up their Faith and Hope in Him. God Bless you all, Kim, Steve, Marissa Faith, Justin, Alex, Grace & Jade
Wednesday, September 3, 2003 9:26 PM CDT Well we almost made it a full week without having another seizure, but unfortunately at 3 AM, Marissa spiked a temp from 97 to 103 in 50 minutes and she had another seizure this morning. It was horrible. It lasted over 8 minutes and we had to call 911, again. She came out of it finally, and was responsive and awake, all day long. Literally, she did not sleep all day and she is just now asleep, hopefully for the night and hopefully, without anymore fevers or seizures. She tried to run a fever all day long off and on. She is normal right now and I pray she will get a good nights sleep, God knows she needs it and so do Mom and Dad. I think Steve and I have had 3-4 hours of sleep in the last 2 days. the girls went to a church picnic tonight with Grace's teacher and they had a great time and were out like lights. Justin and Alex both went to Youth grp tonight as well. I told Marissa to ask God to hold all her pain for her, because she needed her rest to get stronger. I pray we will have better days the rest of the week. She is so precious to all of us and so beautiful and this is just breaking our hearts. We keep praying for her complete and total healing and know that it is in God's Hands. Peter in the Bible talks of Faith and Hope and that is how we began this long and uncertain journey. We knew that we could not weather this storm without placing everything in God's Hands from the beginning. We have held tight to Faith and Hope and continue to do so, every minute of every hour, every day. We thank our Heavenly Father for the Gift of our daughter Marissa, and for each moment we have with her. We pray that she will get stronger every day so she can be a testimony to His Love for all of us. We want to thank all of the staff at Prairie View for their continued prayers, meals, support and love, our neighbors for their love, prayers and offers to help, meals etc, for the staff of South Breeze Elementary School, for all you have done for us, for friends and family for being there for us in our darkest hours with prayer, offers of help etc, for Marissa's classmates and their families for their cards, phones calls, offers of help etc., we know that God is with us for the good days and the bad days. We may not understand any of this, but we know that he is still with us. Please continue to pray for all the other children fighting similar illnesses. In Him, Kim, Steve, Marissa Faith, Justin, Alex, Grace & Jade
Monday, September 1, 2003 5:39 PM CDT Marissa is hanging in there and has been having about 2-3 spikes in temps each day. The first is usually around 5-7AM and the second is usually around 10-12 at night. The highest temp she has run was 103 this weekend. At least we are seeing a pattern to the temps. We ask you to please pray that her body will again be able to control the temps on it's own. She is aware that we are home and is able to let us know YES or NO to questions with her eyes and head. She has not had any headaches. We think she is much calmer at home than she was in the hospital. She has been sleeping alot due to the anti-seizure medicine, but seems more alert and awake today. They told us that it would take awhile for her body to get used to it and that over time and she would not be as sleepy. We are gradually increasing her fluids with the feeding tube and she seems to be handling the increases ok. At least when we give her her meds now, we know that she is actually getting the whole dose and she does not have to work so hard at swallowing. We are setting our alarm to check her temps every hour esp. at night. If anyone is in the area and is interested in helping us for an hour or two or so during the weekdays, in the evening; esp. if you have nursing skills, please e-mail or call. Steve and I have to be able to sleep and take care of the other kids. This is our greatest need at present, besides lots of prayers.
I was able to attend Mass this Sunday with my Mother in Law. (Sunday was also Steve's sister Jan's birthday, we just lost her July 20th)I found it comforting that the readings were from James this week and spoke of Faith and Hope and that with Faith all things are possible if you believe and not let anyone steer you away from believing that with God all things are possible. James 1 speaks of Endurance and says:
To the Twelve Tribes in the Dispersion, James, servant of God and of the Lord Jesus Christ, sends greeting. 2 My brothers, count it pure joy when you are involved in every sort of trial. 3 Realize that when Faith is tested this makes for endurance. 4 Let endurance come to its perfection so that you may be fully mature and lacking in nothing.
Prayer for Wisdom: 5 If any of you is without wisdom, let him ask it from the God who gives generously and ungrudgingly to all, and it will be given him. 6 Yet he must ask in Faith, never doubting, for the doubter is like the surf tossed and driven by the wind. 8 A man of this sort, devious and erratic in all that he does, 7 must not expect to receive anything from the Lord.
James (Response to God's Gift) 27 Looking after orphans and widows in their distress and keeping oneself unspotted by the world make for pure worship without stain before our God and Father.
We do not doubt for a second that God brought Marissa Faith to us for a reason. We do not doubt that if it is HIS WILL to heal her, that He will. We thank Him for the Precious Gift of our daughter and we will remain faithful that He will see us through this trial. We are thankful for each precious hour we have with her. Only God sees the complete picture of her life and we must keep on trusting in Him to see her through. I asked God on Wednesday that if he was going to take her, that he take her now, because I could not bear to see her suffer, but that if we were to keep on fighting and believing that he would help her wake up enough to let us know that she was still with us. She woke up late Wednesday and clearly let us know that she was hearing us and could respond to our voices. She has also not had any more seizures. This is a miracle! We still believe and Trust in Him. We continue to hold onto Faith and Hope no matter what. Please keep the prayers coming. Please also pray for the other DPG children fighting this horrible disease: McKenzie, Maddie, Cheyenne, Julia, Jake, Kody, Christopher, Patrick, and many others. God Bless you all with good health, Kim, Steve, Marissa Faith, Justin, Alex, Grace & Jade
Friday, August 29, 2003 10:56 PM CDT Marissa is HOME! She is in critical, very fragile condition, but we are home. It has been a very stressful week and will be for some time. This will be the hardest update I have had to write and I pray it will only be good news from here on out. Marissa had two seizures on Wednesday AM and we were unable to go to Memphis for her appts and MRI at St Jude. It was not a good day. We called all our family and many friends to come and be with her and with us, as we all felt that we might be losing her that day. She has not had a seizure since Wednesday, but she has had spikes in temps several times, but none as severe as the one she had Sunday night/Monday morning. All tests were negative for any infection or pneumonia, so they feel that her inability to keep her temps stable is all due to the location of her tumor. They all feel that she is deteriorating, but we are not giving up without a fight and know that only God knows what the future holds for our precious daughter and for our family. She came home with the NG tube for feeding her that she should have had a month ago. She is on an anti-seizure medication and we are praying that this will prevent any break through seizures. We have a backup RX incase she still has seizures. Her heart rate has not been stable for much of the week, but they felt she was stable enough to come home, esp. since they all feel that there really isn't anything they can do for her. We continue to pray for her complete and total healing. We are unable to get any home health care, unless we agree to sign a type of DNR with hospice and we refuse to do that, so we are on our own and by the grace of God we will have help from volunteers, friends and family. We finally were allowed to have an MRI done, but want to wait to discuss it until we have her doctor at Dr Jude compare it to her MRI that was done there in July. Our precious daughter needs some mighty prayer warriors praying for her strength and healing right now, as do Steve and I and the other kids. We can't thank you all enough for the prayers, support and love that has been pouring out for her and for us as a family. We still need all of you, now, more than ever before. God bless you and your children, Kim, Steve, Marissa, Justin, Alex, Grace & Jade
PS Please keep McKenzie, Maddie, Cheyenne, Julia, Jake, Christopher, and all the other DPG children in your thoughts and prayers....Their families need all the prayers and support they can get...this is a cross we cannot carry alone...only by the Grace of God can we get through this...we will never let anyone take away our FAITH and HOPE.......in HIM
Monday, August 25, 2003 0:27 AM CDT Monday PM update, Marissa was taken by ambulance late last night to Wesley med ctr in Wichita. She spiked a temp very fast and it climbed to 107.8 and she had a seizure. She is stable tonight, but is flirting with wanting to spike another temp. She is on 2 strong antibiotics, but so far her labs are inconclusive. Her CT did not show any new bleed and appears to be the same as her last CT, her CSF was also clear, so far. (cerebral spinal fluid) We need prayers that she will pull through this and that God will continue to heal her completely and totally. God Bless you all, Kim & Steve
Dear Friends and Family
I know, it has been a long time since the last update, but we lost our internet access due to a virus/pop-up scan we ran on the computer and we are just now back on-line. This will be a short update, as Steve and I need to get some sleep. We have been trying to get the computer back up and running so it is late.
Marissa has really had a pretty good week inspite of more fevers and severe sweating. She ran high temps a couple of times this week, 102.6 and 102.9 were the highest ones and they took forever to come down. She was very tired and lathargic during and after the fevers. She has also had several episodes of sweating and her head just seems to radiate heat like a furnance ready to explode. It seems to come in cylcles about every other day. We think that some of the sweating and fevers may be a form of lysing which is a side effect from the Protocel that we are now giving her. It is an alternative treatment that we have prayed about and researched extensively. She has not been eating very good this week and that has us worried. If she doesn't eat, she doesn't have the energy to work at PT, OT and speech.
She is however moving her head, arms and legs more. It is not alot of movement, but even the slightest movement is good news right now. She is even trying to talk a little. She has said, mom, I and maybe hi this week once each. She is mouthing yes at times and she had not even done that for weeks. We have lowered her steroid dose to about 4mg per day and she seems to only be improving with the lowered dose, even if the improvement is slight it is still improvement and moving towards her recovery. It is still hard and we have just learned to take things one day and one step at a time.
This is going to be a hard week for us as we head back down to Memphis for the MRI at 7AM Thursday morning. We will leave on Wednesday afternoon and it will be a long day of appts. on Thursday. We should arrive home around 8PM. Good news this week was that we finally rec'd some of the equipment that St Jude had said that they would send us on Friday. We rec'd a chair for the bathtub that works GREAT! It makes things so much easier for Steve and I to bathe her. We also rec'd a bedside comode that will save my back from carrying her to the half bath and being in that little bitty bathroom with her. The last thing we received was a tumble form chair for her to sit in during the day and to feed her in. This will be nice to be able to get her out of bed more during the day. We hope it will help her bend her legs better. Her posturing seems to be a little better and we are noticing her arms and legs are not as tight when we try to move them and bend them. Still no respite care or home PT, OT or speech.
Please pray for great news on her MRI on Thursday. We ask you to pray that the tumor is gone, stable, smaller and no growth anywhere, a safe flight and good labs. We are praying for Miracles everyday. Please continue to pray for the other children fighting dpg's: Cheyeanne, Maddie, McKenzie, Julia, Jake, Christopher, Patrick......and for our St Jude friends: Karina, Emily, Emma Grace, Jillian, Christopher....& our China sisters: Kaylyn, Kaylee, Anna & Olivia. If you want any of their websites, please e-mail us. We want to say Thank you to Scout Troop #127 who mowed and trimmed our backyard for us, it looks great! It had been so neglected. Thank you also to the Prairie View staff who have so generously continued to provide meals for us. God Bless you all. We thank Him and praise Him for all the belssings He has given us. Kim, Steve, Marissa, Justin, Alex, Gracie & Jade
Monday, August 11, 2003 9:02 PM CDT Hello Friends and Family
Sorry I haven't posted an update in over a week. It has been just a little crazy around here lately. I tried to post last night, but was just too tired. We still have not been able to arrange any respite care here at home, but we are still working on it and have not given up. Marissa has had no major setbacks this week, but continued to run a temp about every other day last week. This weekend she kept getting flush in the face & her hands and feet would get hot too, but no temp. She has been a little restless & irritable, but doing fairly well. She bent her right leg a couple of times the other day. She had not moved it at all for weeks. She also wiggled her toes some this weekend when I tickled her and that was great to see. Steve and I both saw her move her left arm up a couple of times yesterday, so we are hopeful that she is beginning to show some signs of improvement. She got a surprise from her best friend the other morning, she left a video tape on the front porch of herself reading Marissa a bedtime story and telling a few Scooby Doo jokes. Marissa really loved it! Thanks Michaela! Prairie View Employees have taken good care of us this past week by providing some wonderful meals & for that, we are so thankful. God is so Good! He has sent the most amazing people into our lives and we feel so blessed to have so many people looking out for us. My dear friend Mary took Grace & Jade for a few days to Topeka & the rest of us really enjoyed the break & quiet. They had a blast! She & Caitlin (Caitlin & Marissa have been best friends since they were babies)also came down & spent the whole day with us. Thanks Mary! One of my best friends called on Friday night and said that she was picking me up at 8 AM on Sat and could Steve stay with Marissa. She had scheduled an appt for me to get my hair cut & colored, it had been way too long since I had it cut. Well over 5 months & I cut it then myself. It looks so different, but I love it & my boys really love it. It was really great to get out for a couple of hours. She also treated me to lunch. Thanks Kelly, You're the best! We found out today that Grace will be in the all day Kindergarten! She will start out in the morning for the first 9 weeks and than she will go all day. This is truly an answer to prayer. We are still working on pre-school for Jade & hope to know something soon on that as well. They are still closed for the summer. Marissa will be in the same class as her best friend, once she is strong enough to return to school. The school is having a mtg. tomorrow morning to discuss what they can do for her and will be setting another mtg. with us to write the final IEP. I think it will be good for her to have some interaction & motivation from other people besides mom & dad. She had PT today & will have Speech tomorrow. She is posturing quite a lot still & tonight was especially hard for her. She is sound asleep right now, poor thing is just exhausted, as she had a bit of a rough night. I told the kids that no one is to wake her up or they will be in big trouble. It is quiet right now, at least for the moment. Anyway, we Thank the Good Lord for continuing to send such wonderful people into our lives. We ask that you please pray for all our St Jude friends esp McKenzie www.caringbridge.org/wv/mckenzie & Emily www.caringbridge.org/il/emilymcellen & for all the other children suffering from diffuse pontine gliomas esp for our new friends Maddie 13 http://www.caringbridge.org/mn/maddie & Cheyenne 11 http://www.caringbridge.org/tx/cheyenne5& Julia http://www.caringbridge.org/pa/julialevyPLEASE PRAY HARD FOR HER, she has not been feeling too well. God bless you & your children with good health always, never take your children's health for granted. Kim, Steve, Marissa, Justin, Alex, Gracie & Jade
Sunday, August 3, 2003 12:12 AM CDT Hello
Well our trip to St Jude ended up to be longer than expected. Marissa and I did not arrive home until late Friday afternoon. The trip was exhausting both physically and emotionally. Marissa did get a new wheelchair that will help her and us greatly. We are also getting some other things sent to us that will help as well. She will not be getting a feeding tube at least for now. Her doctor feels that she is just too fragile for surgery right now, so we will just feed her slowly with a syringe and pray that she gets stronger before the next visit at the end of August. Marissa is posturing (or toning) on both sides pretty severely now and they were not able to get her brace on, so we will be using the temporary braces on both legs and pray that the posturing lessens SOON! It is very painful for her and painful for us to see as well. She has a brace for her right hand and now needs one for the left hand as well. The doctors do not know what to tell us to expect at this time, as most people die from grade 4 bleeds within hours or days and Marissa's bleed was over 11 weeks ago now. We feel blessed to still have her here with us and thank God for her strength and courage. St Jude is helping us to arrange some home health care and/or respite care and we hope to know what our insurance will cover sometime early this week. Steve and I can't keep up with Marissa, the other 4 kids and work, alone anymore. They told us it was time to get some help, so we should now be getting at least some help. Marissa had to be seen in the ER in Wichita yesterday as she spiked a fever. She has a bladder infection. I have suspected one for 3 weeks now, but the last culture was negative. The CT scan showed some improvement in the ventricles from the last CT, so that was at least good news. No one knows why she continues to get worse. We need a miracle like never before. It is getting harder and harder to see her in so much pain physically and emotionally. If we could only see some improvement, it would help us all tremendously. It will be a long next few weeks until the MRI on the 28th.
Steve enrolled the kids in school this week and we will know Thursday if Grace gets into the all day kindergarten class with Mrs Kelly and Mrs Weaver. We are praying that she gets one of the few spots. As for Jade, we are hoping to get her into some kind of pre-school this fall as Marissa's illness is really effecting her and she needs some normalcy in her life right now and to be around other kids. She is really hurting seeing her big sister so sick. She loves her so much and wants to be able to play with her again. It is just not good for her to be home 24/7 seeing her sister so sick. Alex will be an office aide this year last hour and he is excited about 8th grade! Wow, where has the time gone? Justin will be a junior this year and that is really hard to believe and I think he would rather do anything but go back to school the 15th. But it will be good for them all to be back at school and out of the house at least a few hours a day. It has been a tough last 7 months on all of us. At least with some help coming now, I will be able to get out a little for some alone time, even if it is just for an hour or so to pray alone in peace. Marissa will be homebound for school at least for now. There is just no way she will be able to go to school until she is stronger. We will be talking to the school sometime this week about what they can do in the way of her education. She is still unable to speak at all, but does communicate to us with her eyes. She can no longer point to the letters on her communication board. We are hoping with physical therapy she will get some function back. Only by the Grace of God will we get through this. We know that He is holding all of us right now. Father John came by a little while ago and gave her and I communion and offered a blessing for Marissa and prayed with us. She seemed happy to see him. He is going to start coming every week now on a regular schedule and said that he would come anytime we call him. Please keep Marissa in your prayers as well as all our other St Jude friends esp. Emily who has not been feeling well and Kaylyn Wacker and Kailee Wells our Chinese sisters. (link below) Please pray that this bleed will resolve itself somehow and soon. Marissa just can't get any worse than she already is. Pray that we can find a way to put Jade in pre-school and still pay the bills. Pray that Marissa can get some function back so she is not confined to a wheel chair and bedridden, she is not one to want to be idle at all and she is so depressed about her limitations.
From Psalm 31
A Prayer of Hope
We come to you, Lord, for help, never let us lose our hope in You. You are the Highest Good, save us, we pray, and protect us.
We place ourselves and our daughter in Your care. You will save us Lord, for You are a faithful God. We put all hope in You. We are very happy because of Your Love for us. You know our troubles, and see whatever hurts us. We know You will keep us safe. Our trust is in You, Lord; You are our God. We are always in Your care. We are your servants and Your children, look on us with kindness; save us because of Your love for us. Lord, make us strong and brave, because we hope in You, and love You. Isaiah: 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 be faint. God bless you all, Kim, Steve, Marissa, Justin, Alex, Gracie & Jade
Wednesday, July 23, 2003 12:56 AM CDT Dear Friends and Family
First of all, for those of you who do not already know, we are sad to say that Steve's sister Jan passed away about 4 pm on Sunday afternoon. She died peacefully and is now in her savior's loving arms and with her father who passed away about 22 mos. ago. Steve and the boys left for Topeka to pick up Steve's mom and head to Lincoln this morning. The serice will be tomorrow at 1 PM. They should be home late tomorrow night. Please keep Steve, his Mom Dorothy, Sister Linda, Neice Jaime and BIL Harry in your prayers.
Marissa and I's flight to Memphis was cancelled late last night,(we found out almost at the last minute before leaving for the airport) due to bad weather in Memphis. They are reporting that this was the worse storm to hit the area in 100 years. Power is out in much of the downtown area where the Marriott and St Jude are located and many of the hospitals are running on back up generators. Marissa's appts have been changed to the same time next Wednesday. So we will leave next Tuesday and return Wed PM.
Marissa seems to have stabalized and is showing some small signs of improvement and at this point we will take even the small steps. She however wants to see BIG improvements, as she wants her independance back! She does not like not being able to communicate with people or do things for herself at all. She had a fall in the bathrooom this afternoon, I will not go into details, but please pray that the fall will not cause her any more problems and that it will not cause her any new hematomas or bleeds.
We want to thank you all for the extra prayers over these past few weeks since Marissa suffered the bleed, we feel them and appreciate them more than we can say. Also, for the prayers for Steve's family and for our family for the loss of a sister, a SIL and for a wonderful Aunt. Please keep all our St Jude friends in your prayers and Kaylyn Wacker and Kailee Wells, our China sisters. Kaylyn's website is below and she has a link to Kailee's site as well.
Strength
Even youths grow tired and weary, and young men stumble and fall: 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 be faint. Isaiah 40:30-31 NIV
Friday, July 18, 2003 2:16 PM CDT Dear Friends and Family
Marissa seems to be stabalizing finally and we are seeing very slight improvements in some areas. She had a swallow study here at the hospital yesterday instead of St Jude because of schedule and flight problems, and it all went well. However, they feel that she is at a high risk of aspirating, since she is so weak and she is having about an 8 second delay in swallowing and it takes her 2-3 swallows to get even a small amt of liquid down. She is really not able to chew anything, her palate is just so weak and she is most likely experiencing some sensory loss in her mouth as well. So we are considering a feeding tube to ensure that she is getting adequate nutrition and fluids. She did well in PT yesterday and did quite a bit more than she did during her session on Tuesday. We are praying that she has indeed reached a turning point. Now if she can just get enough strength back to get her voice back, that would help her mental state for sure. She has seemed so depressed lately and she is usually the one who keeps us all going with her sunny disposition and determination. We keep telling her that she has to keep fighting, but she says that she can't. This is hard for all of us to hear, so we just keep trying to encourage her to keep up the fight, and we keep reminding her how much Jesus loves her, but she is going through an angry period and we can't blame her. Steve is going back up to Lincoln NE this evening and plans to stay until Tuesday. His sister Jan has been taken off the ventilator and was moved to a hospice on Tuesday or Wed. They are saying that she does not have much longer. This has been hard on all of us, esp with Marissa so weak these past several weeks and with just losing Steve's father not quite 2 years ago and having my grandparents so ill. It seems like it has all hit at once. Marissa and I leave for Memphis on Tuesday evening to get her brace and have a checkup, no labs or MRI, and should return home on Wed. night. Anyway, Marissa seems so much happier and upbeat today and it is making us all happy, to see her happy. Unfortunately, we had to cancel her Make-A-Wish trip to Disney, as she is just too weak and the Florida heat would just be too much for her right now. We hope to go in the fall when it is cooler and she is stronger. We thank you for all the prayers for Steve's family and for Marissa, for the meals from neighbors and your guestbook entries, they mean alot to all of us and help to keep us going. God bless you all, never take your children for granted. They are precious gifts from God and we only have one chance to get it right. Kim, Steve, Marissa, Justin, Alex, Gracie & Jade
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct your paths. Prov 3:5-6
Sunday, July 13, 2003 1:19 PM CDT Dear Freinds and Family
Well it has been a pretty rough week at our house. Marissa had another CT scan on Tuesday and we met with her local neurologist on Wednesday. He and her Dr at St Jude think that it is still the swelling from the bleed causing her to have these horrible headaches. She is still on a pretty high dose of decadron, but we are trying to bring it down slowly. Her dose has been lowered 2 mg since Wed and we are hoping to lower it another 2 mg on Monday. She is still having a lot of posturing in her right leg and arm and she is beginning to show some signs of posturing on the left side as well. She also continues to have trouble swallowing and some trouble with breathing. We are trying to get her to lay on her stomach more to help her breathing as well as help to clear out any secretions she can't caugh up. Her palate is still so weak that she can't caugh very well and she still cannot really talk. We are relying on patience and a couple of communication boards to help us figure out what it is she is trying to tell us. A couple of mornings she seemed to be able to talk pretty clearly, but she is just too weak to get enough sound out and several letters are hard for her to say right now. We can all tell how frustrated and angry she is becoming from this current situation. We are jut praying that she will begin to improve soon and she won't get any worse. Marissa is so use to being so independent that it is so hard for her not to be able to do anything for herself. Her brace is suppose to be ready for the final fitting on the 16th and we should know Monday what day we will need to be back in Memphis for that. It should just be a one day visit with no labwork, but she may have a swallow study done while we are there.
This week has been made worse by the fact that Steve's sister Jan was diagnosed with MS last week and Monday afternoon she suffered an irregular heart beat and has been in ICU in NE on a ventilator and unresponsive ever since. we did not find out until Tuesday night when we got back from the hospital with Marissa. She is beginning to breathe some on her own, but the doctors are not very hopeful at this point. Today her pupils are different sizes and we understand that this is not a good sign. We however are continuing to pray that she will soon show signs of improvement and are holding tight and praying for a miracle. Steve drove to Lincoln on Wed and got home early this morning. He may have to go back up, but wanted to come home for a couple of days, he really needed to see Marissa. My dad drove down to see us on Thursday from MN and he and Justin ran several errands for me, tried to make some repairs around the house that have been put off for too long and helped me get an ad in the paper for the cars and Justin's truck we need to sell. My sister Michele came over on Th and Fri to help me from Wichita. My other sister Gina and her oldest daughter Nikki, came to see us for the day yesterday. One of my best friends, Kelly and her daughters came to see us as well yesterday, along with her sister Robin. They all did there very best to make my birthday weekend a little brighter with everything we have been going through. Oh and my sister Heather came yesterday evening to see Marissa as well, but by the time she got here Marissa was out. She promised to come back again when Marissa was awake. It was so nice to have the adult company, but by 6 PM Marissa was out like a light and she slept until almost 1 AM. It was so wonderful to have company here of friends and family, the last 8 weeks we have all felt pretty alone. Anyway, as you can see we need some pretty powerful miracles to take place in our lives right now and strength to get through each day.
We are questioning daily, the saying that God will not give us more than we can handle. In fact a co-worker of Steve's reminded me of a famous quote by Mother Teresa: " I know that God will not give me more than I can handle, but sometimes, I wish He did not Trust me So much." So we will hold onto that and remind ourselves that He has a purpose and a plan for each of us and we need to continue to place our trust in Him and He will see us through. Please keep Steve's mom Dorothy, his sister Linda, BIL Harry and neice Jaime in your prayers this week, as well as Marissa that she will begin to get stronger again very soon. Also, please remember the underground Christian and Catholic Churches in China, in your prayers, many are holding daily masses and praying for Marissa's recovery at great risk to themselves. Many have prayed for her daily since December and continue to ask how she is doing so that they can pray for her specific needs. These people sacrifice so much everyday, so that they can pray for others and spread God's word. Thank all of you that have helped make this week a little more bareable for our family, including all our neighbors who have provided nurishment for our family in the way of meals, support and comfort and to all of our friends, family and co-workers who have come to our aid these past few weeks.
God bless and hold you all in the palm of his hand, as we know he is holding our family right now. Kim, Steve, Marissa, Justin, Alex, Grace & Jade
Friday, July 4, 2003 8:54 AM CDT Dear Friends and Family
First of all, Steve and I would like to thank you all for the prayers that have gone up for our beautiful daughter Marissa. I am not sure who has heard the most recent update and who hasn't, so I wanted to let you all know how the rest of our appts went at St Jude.
Marissa's doctor told us Wednesday morning that they were almost certain that Marissa suffered a grade 4 bleed in her brain stem sometime around the time we started to see her declining (7 weeks ago yesterday). They had told us for the last 7 weeks that they thought it was radiation necrosis. A grade 4 bleed is life threatening, so they have had to take her off the drug study because her chemo can cause bleeds and she could not get through another bleed like she has already had. The team has now all agreed that this is indeed what has happened and they all agreed that she had to come off the current drug study. Unfortunatley, there really isn't anything else out there for her type of tumor with any promise. There are others out there that cause bleeds as well and others that drop their counts to nothing which then puts them at risk for catching infection after infection and no real promising hope anyway. Some can cause hearing and vision loss etc., so why would we put her on something that would cause another bleed or something that would cause her to get very sick that hasn't shown any promise for her type of tumor at all anyway. We are at peace and know that God is holding her and taking care of her, helping us decide what to do next. We believe that when God closes a door a window is opened, sometimes even before we realize it. We were led to something almost 4 weeks ago, that is showing great promise in the treatment of many types of cancer, including brain tumors. We have been reading everything we can get our hands on about it since finding out about it, knowing that at anytime they could take her off the chemo she was taking and we wanted to know all our options, especially with seeing her rapid decline these last 2 weeks. It has helped that Steve is a pharmacist, so he has been able to access literature fairly easily, and thank God for the internet. I do not want to say anymore about this treatment at this time, because we have not yet discussed it with her doctor. I will say that we would not give her anything that we know would make her worse, or is too contraversial. We will however consider anything that is non-toxic, safe and showing promise and what we have found is all of these. We will return to St Jude in a week or two to finish the fitting for her leg brace, they do not want to wait 4 weeks for us to come back for that, but at least we should just be there for one day. They want to give her body one month to try to finish resolving the bleed before we start her on anything else. Her MRI shows little, if any enhancement of the tumor now, which is good and the edges do not appear defined at all, which is also good. The area of gray and black has increased, which usually means that those areas of the tumor are dead. Really the only areas that are enhanced right now are the areas where the blood from the bleed are trying to resolve. On the last MRI we could clearly see the tumor and the center, but now, we can't. They say that it hasn't grown at all and it is stable. From what we understand, a bleed can happen when cells are dying and when the tumor is growing, as well as from the chemo. At least we know that it did not happen from the tumor growing. They will repeat her MRI in 8 weeks.
We are anxious to get her physical, occupational and speech therapy started. She needs that right away. She has lost muscle tone in her palate and right leg the most and is having a really hard time trying to talk, she is almost impossible to understand, so I will be trying to put together some type of communication board with pictures until her ability to speak returns. She can no longer walk unassisted and has to be carried or use the wheelchair. We are watching her swallowing carefully as well as her breathing. We would appreaciate your continued prayers for her complete recovery from this bleed and that her tumor will remain stable, also that our insurance will cover most of her treatments for therapy here, so we can remain at home and get her therapy as an outpatient. Again, we thank you all for your prayers, friendship, support and for signing her guestbook. You have all been a great comfort to our whole family. Marissa is our world and we will continue this fight. She is more precious to us than gold, for she changed our whole world the day she came into our lives. We see the power of prayer working in our daughter everyday. Blessings to all and hug your kids tight, the Burgharts: Kim, Steve, Marissa, Justin, Alex, Grace and Jade
WITH GOD, ALL THINGS ARE POSSIBLE.....Trust in the Lord with all thine heart, and lean not on your own understanding. Through HIM, all blessings come.
Tuesday, July 1, 2003 10:48 PM CDT PRAISE REPORT, PRAISE REPORT! Our God is truly an awesome God and he has heard and listened to all the prayers being lifted up for our precious daughter Marissa!
When we got here, Marissa's Doctor was very concerned with her rapid decline since the last visit and ordered a CT scan right then to check to see if she had hemoraged or something. Well nothing looked alarming so she increased her steroids to see if this would relieve some of the symptoms we were all seeing and everyone was afraid that our short honeymoon had ended, and she told us we would have to see what the MRI shows to be sure of what was going on, so it was a long night and it has been a long day. The good news is that her tumor is STABLE! It has not grown at all. There even appears to be less inhancement than before and the dark area is darker. We will see the pictures tomorrow. They went back and looked at her last 2 MRI's because of all the symptoms of tumor growth and what they think has happened now is that sometime during or around the time of the last MRI in May here at St Jude, she suffered a bleed, which is common in her type of tumor. they do not think this is all necrosis, but a bleed and necrosis, but NO GROWTH! They say that the bleed has been trying to resolve itself and has caused swelling which has mimicked tumor growth. She had her physical therapy appointment today and I think everyone there was worried too. She will have an RX now for PT at home 3 times a week and also OT 3 times a week and speech therapy. We will not know for a long time if there has been any permanent damage and it may take time and a lot of hard work to get thru this, but we feel ready for the fight to win back Marissa's health. I prayed in the little chapel here while she was having her MRI and talked her into letting Steve stay with her so I could have that time to pray in quiet and boy was that time alone good for me to just sit quietly with no noise or interruptions to talk to God. I felt at peace leaving the chapel and felt God with me and more sure that somehow things were going to be ok no matter how bad they looked, I knew leaving there that God had everything under control. I went out the door saying over and over: With God all things are possible and Trust in the Lord with all thine heart and lean not on your own understanding. That has been my favorite verse for some time, but never did I realize how important those words would become to me personally. I wrote in the book at the front of the chapel before leaving: For all parents coming through these doors, never forget that God is the ultimate physician, trust in him always and never let anyone take away your Faith, Hope and Love, for these are the greatest gifts he has given us. No matter how bad things may seem, if you have these gifts anything is possible.
Marissa will be fitted for a brace tomorrow morning to help build back the muscle tone in her right leg and foot. It will not be ready until the next trip in 28 days, but we have a temporary one to use until than. She will wear it at night to gently and slowly stretch her muscles in that leg. She wore the temporary one all afternoon and is already moving that foot on her own and wiggling more of her toes. That brought a smile to her face. We had been feeling so much stiffness and already her foot is moving more freely for us and seems so much softer and pliable. We also have a list of things to help her gain back the strength in her palate that is also weak from the swelling causing all her speech problems. She said a few words very plainly today and that was awesome. We know she will be talking again very soon. She seems so much happier tonight and for this we are so thankful. Words cannot express our gratitude to our pleas for prayer. We know that God has listened, just as he has promised us. We will keep you posted on her progress. We feel our faith and spirit renewed. I told Steve we would sleep better tonight than we have in weeks, but we are so elated with this wonderful news, that I may not sleep at all. Again, we can't thank you enough for continuing to keep Marissa and our family in your prayers. Kim, Steve, Marissa and Alex in Memphis
Saturday, June 28, 2003 7:59 AM CDT Dear Friends and Family
We are in great need of prayer at this time. Marissa has not had a good week and seems to be getting worse everyday. She is barely able to speak at all and same with her walking. She tried to draw yesterday and cried and cried because she said that she can't draw anymore. This is tearing our hearts out. She says that she hurts everywhere, but she does not have a headache. We are not sure what is happening, so are anxious to get the MRI done on Tuesday. Tuesday seems so far away right now. I called our church last night and Father is coming over this morning at 9AM to give her the sacrament of the sick again. I felt is was important to have him come before our trip back to Memphis this weekend. We are not going to take the girls with us afterall and they will stay here with my mom. Alex is going to go with us, but we have mixed feelings now about taking anyone. I really wish we were flying this time instead of driving. Please pray that she does ok with the drive and that the MRI shows us that she is stable. I have tried not to cry in front of her these last couple of days, but I just can't stop the tears anymore. She is suppose to have a visit with the speach therapist and I know she is not going to be able to do the test at all. Steve and I are in great need of strength to get through this. We are so afraid of what is happening. We pray that this is still necrosis, but are becoming more and more afraid that it is more than that. Our family needs prayers to get us through this. I know all the kids are struggling with seeing her get so bad again. These last 6 weeks have been so tough on all of us, esp. the last 2. The neighbor kids keep asking for her to play and she just doesn't have any strength. She did go for icecream with Mrs Kelly this week, but other than that she has just been sitting up and sleeping. She has not been able to draw for five or six days and I had hoped that it was just because she was too tired. Now when she finally wants to draw again, she says that she can't do it anymore. She is asking us why she can't talk and why she can't bend her foot, meaning her right ankle. I think she is really afraid of why she can't draw right now and I think it has really upset her. We told her that it was the necrosis and that it might get worse before it gets better again. She seemed to accept that, but you can tell that she is not happy about what is happening and she is very aware that she has gotten much worse rapidly. Mentally, she is still so bright and that makes this even more difficult. We are thankful for all the offers of help this week from friends and family. We really appreciate it. We will have the laptop with us in Memphis and will let you know how things are going as we can. We will also have the prayer pager and our cell phones with us. Of course we have to shut them off when we are in the hospital. We know that God can still heal her and we will not give up this fight, but we need prayers now from everyone. Please ask your churches to add her to their prayer list. We would really appreciate it. God Bless you all and please hug your children extra tight. Love, Kim, Steve, Marissa, Justin, Alex, Gracie and Jade
Monday, June 23, 2003 8:26 PM CDT What Cancer can not do
Cancer is so limited
It can not cripple love
It can not shatter hope
It can not erode faith
It can not destroy peace
It can not destroy confidence
It can not kill friendship
It can not shut out memories
It can not silence courage
It can not invade the soul
It can not steal Eternal Life
It can not conquer the spirit
It can not lessen the power of the resurrection
If an incurable disease has invaded your life, refuse to let it touch your spirit. Your body can be severely afflicted and you may have a great struggle. But if you keep trusting God's love, your spirit will remain strong. Why must I bear this pain? I cannot tell, I only know my Lord does all things well, and so I trust in God my all in all. For he will bring me through whatever befalls. Our greatest enemy is not disease but despair.
(Authors' full names unknown)
Well it is Monday and we are glad that last week is over and that a new week has begun. Marissa did not have a good week last week at all. She seems to be getting so much worse. She is having more and more difficulty with speaking and is asking us why she can't talk right. She is having a lot of trouble with walking and she is still having some trouble with her eyes, although they seem to have stabalized some. She is crying a lot from the steroids and all I can do is hold her and try to get her to take deep breaths when the crying starts or she tends to hyperventilate. It can take anywhere from 15 minutes to an hour to calm her down and she will not let me leave her side. When she starts to cry, she cannot tell us what is wrong, it is most likely just the steroids. She had several episodes last week and many of those were almost back to back. Needless to say we were not able to lower her steroid dose anymore at all and we are becoming more and more anxious to get the MRI done next Tuesday. She has also been drooling off and on over this past week, but this too seems to have stabilized some at least. We have a lot of prayer requests for this week and next. First we want to thank God for the good news we have heard from one of the children at St Jude, Emma Grace and her family have just learned that she is in Remission. Praise God for this wonderful news! Please pray that our friend Mckenzie's MRI and PET scans come back good on Thursday and that Rawan's scans are also good next week. She has hers the day before Marissa. Pray that what Marissa is experiencing is just necrosis and not active tumor growth and that she will begin to heal from this horrible last 5 weeks of suffering from the radiation necrosis. Steve and I are exhausted and concerned. Thank God my mom took Grace and Jade for a couple of days, to give me a little bit of a break. Grace stayed a little longer and would just about have moved in with Grandma Connie, but she missed Jade too much and wanted to come home. Jade went to the park one evening with Mrs Preston and she had a blast. Marissa enjoyed the quiet, as noise really bothers her right now. She is looking forward to going to DQ for icecream with Mrs Kelly, one of her very favorite teachers, on Thursday. She is drawing some, but not as much as usual, she has just been too tired to do very much. We are grateful to all of you and want to thank you all for your continued prayers, support and understanding during this difficult time. We also thank God for leading us to St Jude and to the many friends we have made over these past 6 months since Marissa was diagnosed. We are thankful for each new day that she is with us and continue to believe that God can heal her completely and totally. God Bless all the precious children fighting cancer, Kim, Steve, Marissa, Justin, Alex, Gracie and Jade
Monday, June 16, 2003 1:15 PM CDT What Cancer can not do
Cancer is so limited
It can not cripple love
It can not shatter hope
It can not erode faith
It can not destroy peace
It can not destroy confidence
It can not kill friendship
It can not shut out memories
It can not silence courage
It can not invade the soul
It can not steal Eternal Life
It can not conquer the spirit
It can not lessen the power of the resurrection
If an incurable disease has invaded your life, refuse to let it touch your spirit. Your body can be severely afflicted and you may have a great struggle. But if you keep trusting God's love, your spirit will remain strong. Why must I bear this pain? I cannot tell, I only know my Lord does all things well, and so I trust in God my all in all. For he will bring me through whatever befalls. Our greatest enemy is not disease but despair.
(Authors' full names unknown)
Marissa is about the same this week as last week. We have been able to decrease the steroids a little more and hope to be able to reduce them again this week, but we will have to see how she is doing when her doctor calls later this week. I have noticed that her eyes seem worse the last couple of days, but she says that she is not having any double vision, or nausea. Because of this, we may not be able to reduce the steroids any more for right now. She is drawing a little each day and has been playing games on the computer and palm pilot. This is at least a slight improvement in her activity level. Her appetite has also been pretty good and we are trying to get her to drink more water. She went to see Rugrats go Wild with Justin, Steve and Jade and she loved it! She also went out for Chinese Buffet the same night with Steve, Justin, Grace and my mom, (Grandma Connie) Jade and I stayed here and I worked on laundry and tried to rest a little. Thursday and Friday I had a nightmare situation with work and was exhausted all weekend from the stress and lack of sleep. I had driven to Beloit Thursday morning at 4:30 AM to meet with our social worker and an adoptive family and that went well and then we had a crisis pregnancy situation and I had to drive out of town that evening, got back home and to bed at 5 am, only to begin my day at 8:30 the next morning. Anyway, we are anxious and nervous about Marissa's next MRI on July 1st with her still having so many problems from the radiation necrosis. Please pray that the tumor is gone, shrinks or is at least stable. We hate seeing her this way and are worried. We know that God is greater than this cancer and that HE can heal her. We continue to pray for a miracle. She is so special and means so much to so many people. She is such a special gift to our family. Please also pray for Brendle's family, as today would have been Brendle's 8th birthday. May God hold her family especially close today. We pray for all our friends at St Jude and for all the children and their families that we have met via the internet, that someday, no parent will have to hear that there is nothing that can be done for their child. May they always have Faith and Hope. Thank you for the continued prayers and support. Kim
Sunday, June 8, 2003 8:23 AM CDT What Cancer can not do
Cancer is so limited
It can not cripple love
It can not shatter hope
It can not erode faith
It can not destroy peace
It can not destroy confidence
It can not kill friendship
It can not shut out memories
It can not silence courage
It can not invade the soul
It can not steal Eternal Life
It can not conquer the spirit
It can not lessen the power of the resurrection
If an incurable disease has invaded your life, refuse to let it touch your spirit. Your body can be severely afflicted and you may have a great struggle. But if you keep trusting God's love, your spirit will remain strong. Why must I bear this pain? I cannot tell, I only know my Lord does all things well, and so I trust in God my all in all. For he will bring me through whatever befalls. Our greatest enemy is not disease but despair.
(Authors' full names unknown)
Marissa continues to do pretty well. She is drawing a little each day, but still tires easily and is still pretty quiet and has not been very talkative, or active. She would not go to sleep last night until Daddy was laying down with her. Mom was not enough last night. He tried forever to get Jade to go to sleep and finally he was able to come downstairs with Marissa. Marissa is really puffy right now from the steroids, so we are hoping that she will be able to tolerate lowering the dose as much as possible. Her personality has been so effected by the high dose she has been on, that it will be good to get her to a lower dose or off of them as soon as possible, so we can see the happy, active, bubbly, smiley girl that we all know and love again. She has been laughing some the last couple of days and that is music to our ears. She had not really smiled at all for days and had been so sad from the steroids. She has probably also gained 5 lbs from the steroids. Good news to report: Marissa got her wish to go to Disney World through Make-A-Wish, so she and the rest of the kids are getting really excited about the trip. We will stay at Give Kids the World, and will be able to visit the parks and hopefully take the kids to the beach at least one day while we are there. The trip won't be until later this summer, so please pray that she continues to get better so she can really enjoy the trip. She can't wait to see Mickey Mouse and Sea World. Jade of course wants to see Cinderella's Castle. We probably won't be able to get her out of there. I'm sure they will all enjoy the trip. I know that I am looking forward to the family time together away from doctors appts and the phones. Alex left for Scout Camp today and will be gone until next Sat. He will be home for less than 24 hrs. and than leave for tennis camp in Manhattan for another week. He was so excited. Please continue to pray for Marissa's complete and total healing. Her next MRI is July 1st. Our prayer request is that the tumor is completely gone. We believe in Miracles. We want to thank you all for the continued prayers, support, friendship and love. Please remember to sign the questbook, Marissa looks forward to your messages, as do we. God Bless you all with good health and happiness, Kim, Steve, Marissa and the rest of the gang.
Friday, June 6, 2003 12:47 AM CDT What Cancer can not do
Cancer is so limited
It can not cripple love
It can not shelter hope
It can not corrode faith
It can not destroy peace
It can not kill friendship
It can not suppress memories
It can not silence courage
It can not invade the soul
It can not steal Eternal Life
It can not conquer the spirit
A Friend sent us this and I wanted to share it with all
our friends, esp. our friends at St Jude.
Marissa has been doing a little better the last couple of days and has even started to draw a little again. Seeing her in her element does my heart good. She is talking a little more and is a little more active than she has been, but still not back to her bubbly self, but getting there, one step at a time, with God holding her every step of the way. God is faithful and he is sustaining us. Her steroids have been lowered a little and she is still doing good, thank God. That's all I have for today other than if you haven't checked out her picture pages lately, we have added several more, including some of her artwork. The scans do not do them justice, I am sorry about that. A few of them turned out ok, but many are hard to see the incredible detail she puts into them. I will try to see if I can fix them, but it may be a while before I have the time. Thanks for the continued prayers for Marissa. God Bless, Kim
Friday, June 6, 2003 12:47 AM CDT What Cancer can not do
Cancer is so limited
It can not cripple love
It can not shelter hope
It can not corrode faith
It can not destroy peace
It can not kill friendship
It can not suppress memories
It can not silence courage
It can not invade the soul
It can not steal Eternal Life
It can not conquer the spirit
A Friend sent us this and I wanted to share it with all our friends, esp. our friends at St Jude.
Marissa has been doing a little better the last couple of days and has even started to draw a little again. Seeing her in her element does my heart good. She is talking a little more and is a little more active than she has been, but still not back to her bubbly self, but getting there, one step at a time, with God holding her every step of the way. God is faithful and he is sustaining us. Her steroids have been lowered a little and she is still doing good, thank God. That's all I have for today other than if you haven't checked out her picture pages lately, we have added several more, including some of her artwork. The scans do not do them justice, I am sorry about that. A few of them turned out ok, but many are hard to see the incredible detail she puts into them. I will try to see if I can fix them, but it may be a while before I have the time. Thanks for the continued prayers for Marissa. God Bless, Kim
Tuesday, June 3, 2003 11:21 PM CDT *******Lots of New Photos added*******
Dear Friends and Family
We just finished dinner and getting the kids in bed. Marissa is still awake, but barely. She is exhausted. Steve and I are as well. I wanted to send just a quick update before calling it a night. I need to get some sleep. I didn't sleep more than about 3 hours last night and I am feeling it. Justin is not feeling well tonight. I hope it isn't anything serious.
Marissa was seen by the nurse pratitioner today and had all her labwork drawn. I am happy to say that she is still on the same protocol and they do think that this is most likely radiation effects, that are mimicking the tumor. We are praying that it will stabalize soon and that we can continue to try to get her steroid dose down. Steve was able to get a wheel chair to borrow incase her walking gets any worse. He found it very helpful in the airport today and he was glad that I told him to ask if we could borrow one from the hospital. Marissa cried when she saw me at the airport, just as she cried when I took her and Steve last night. I cried the whole way home yesterday, actually, I cried, screamed and prayed the whole way home. I did not want to leave Steve and Marissa at the airport and not go with them. I was very glad to have her back home with me.
Last night was no fun at all. I was already a mess and was trying to find a passage in the Bible for some guidance, wisdom, hope, or something to hold on to, when we learned that a neighbor was missing and we went out looking all over town for him and finally, we were the ones that found him and talked him into going home. We are so glad that God lead us in the right direction to find him. We are thankful that he was found safe and sound and that no one got hurt. Jade was so cute in the back seat as we were looking for him, she said: "Mommy I am going to pray for Scott and Marissa". She got really quiet for several minutes and then said "Mommy I'm done now". I was praying to myself for God to tell me the right direction to go to find him, as no one out on the streets had seen him and we live in a small town. It seemed like there were a lot of people and kids out walking, riding bikes, etc. and no one had seen him anywhere. We had driven everywhere we could think of to look for him and there was no sign of him anywhere. Finally, I let Alex off back at the house and he and another friend were going to look on their bikes and Justin decided to go back out and look with me and the little girls. He suggested that we look over by another creek and told me to turn and go west on 1st street. A few blocks later, I spotted his shirt by the description Alex had given me and turned the corner quickly so we wouldn't lose him. I was so glad that we were able to talk him into going home with us. I know now that I was needed at home last night and was glad I was here even though it was so hard not to just go with them. I am not sure how much patience Steve would have had to have driven around last night with the rest of the kids in the car and I was not about to give up looking for Scott. Scott is Alex's best friend and we love his family and we could not have sat here and done nothing to help find him. I had to tell the girls to be quiet a couple of times, but they were actually pretty good and I think they understood how important it was, what we were doing.
We are praying that Marissa will once again improve and the necrosis will not harm any more healthy cells than it already has. It is so hard to see her go back and forth so much and she knows that she can't do things right now, that she could just a few days ago. The steroids are also making her cry a lot and her personality has definatley been affected. She is just not her usual bubbly, outgoing self right now. It is so hard to see her going through all this. She is hardly talking at all and she is usually very social and talkative to everyone around her. She is not doing her art work, or playing with her Gameboy, or going outside or any of the things she loves to do. Her tastebuds are off and she is only hungry for this or that and won't eat much of anything. I guess the only good thing right now is that she hasn't been nauseous for about 6 weeks now and that is the longest she has gone without vomitting since this all started in December and that they are leaving her on the same protocol.
Her face is swollen from the steroids and she is not happy about much right now. I am really missing her beautiful smile and I pray that as the steroid dose is lowered her smile and personality will come back. She is the light of our lives and we are determined to beat this cancer. Children should not have to suffer like this and parents should not have to watch their children suffer. It is just not fair. She is so special to so many people.
Pray request for the next 28 days until the next trip back to Memphis:
1. That the necrosis will stabablize soon so her brain can heal and she can be herself again and do the things she loves so much.
2. That the tumor itself will shrink more between now and July 1st when she has the next MRI. It would be awesome if it were gone completely! Pray that God will hear the multitude of prayers being sent up for Marissa and that he will heal her completely.
3. That we all have the strength to face each day, each week, each month as we fight this battle together.
4. That she does get her wish to go to Disney World and that she will be doing well enough to really enjoy it and have fun.
5. That she only continues to get better from here on out and not this roller coaster ride we have been on lately. It is so hard to see her get better and than worse and than better and than worse again. When we wake up in the morning we never know anymore what she will be able to do or not do.
I have a couple more, but I will keep those intentions private between me and God, but as always, I ask you to please pray for all the other children fighting cancer and disease and for their families. We know how hard it is to have a child diagnosed with a devastating illness, as we are walking in the same shoes everyday. I think of the children that are ill in orphanges without families of their own and I think of how frightened and alone they must feel. I feel alone and afraid and I know that we have so many wonderful caring friends and family and total strangers praying for our daughter, that I cannot even imagine facing an illness like this alone. We are very blessed to have all of you out there for us. We can't thank you enough. We will keep you posted as often as we can.
God Bless you all, Kim, Steve, Marissa, Justin, Alex, Grace and Jade
HIS KIDS Adoptions Intl http://www.hiskidsadoption.com Parents of 5:Justin 16 USA, Alex 13 USA, Marissa Faith 7 1/2 Dianbai, Guangdong, Grace 5 Changsha, Hunan & Jade 4 1/2 Changsha Hunan. Pray for Marissa who is fighting a brain tumor & 4 of the other Chinese daughters that are fighting cancer: Kaylyn 3 Dianbai, Guangdong http://www.geocities.com/ccbubbles17/Prayer.html Kailee Chengde, Hunan http://www.kaileegetwells.com & for Sharon Leukemia and Anna 2 Brain Tumor
Monday, June 2, 2003 2:07 PM CDT Dear Friends and Family
Steve and Marissa will leave for Memphis tonight at about 7 PM and will return tomorrow night about 6:35 PM. Marissa has been getting worse with her balance, eye movement and speaking, even with the steroids. Please pray that it is just the necrosis and not the tumor and that they will not take her off the drug protocol. I really wish I were going with them this time, but when we made the reservations, she was doing so well and Steve wanted to take her this time to give me a break. Now we can't afford to get another ticket this late. I will be glad when they are home and I know that she is still on the same protocol and that they all think her setback is from the necrosis and that she will get better again.
Last week we met with the people at Make-A-Wish. It was hard in a lot of ways to have them come and ask Marissa what she wanted to wish for. Steve and I had very mixed feelings about the whole thing. It was already a very difficult week with learning of Brendle's passing, on the same day. Marissa wished for a trip to Disney World and Sea World. If she could meet someone, she told them Michelle Kwan! Her second choice, if she can't get her 1st wish, was to go to Lego Land in San Diego. They are suppose to call us sometime this week and let us know what wish she gets. If we go to Disney, we will most likely go right after the second week of July when Justin is finished with summer school. We are praying that she remains stable and gets better before the trip and that her doctor will give her permission to go. The kids are excited to get to go as a family. God knows we need some time together without phones, hospitals, appointments etc. etc.....
We thank you all for being their for us and for your continued prayers, patience and understanding during this difficult time. Please continue to pray for our friends at St Jude, esp for Brendle's family, she has touched our hearts deeply and she will be missed by so many people, who had the chance to know her. She is a Special Angel and we will hold her memory in our hearts forever. We ask you to please pray for Bailey, Christopher, Emma Grace, Emily, Jillian, Karina, Katie, McKenzie, Rawan, & Sara and Please also pray for all the China daughters fighting cancer, Anna, Kaylee, Kaylyn, & Sharon.
God bless you and your children with good health, Love,Faith, Hope and Happiness, always, Kim & Steve, Marissa & the rest of the Gang~
www.caringbridge.org/ks/marissa
Friday, May 23, 2003 10:12 PM CDT Praise God!
The steroids are working wonders and Marissa is doing soooo much better. I cannot even begin to tell you how much better we are all feeling about this glorious news. Thank you all so very much for praying extra hard these last few days. It is working wonders! She is walking a lot better and her speech seems to be getting better and better by the hour. Her doctor at St Jude finally called today and the MRI showed swelling from the necrosis, which was causing her all the problems with walking, speech, swallowing etc.
She is still not back to where she was, but we are a lot closer now since beginning the steroids. Her doctor thinks that since she is responding to the steroids so well that we can begin to lower the dose by this weekend. She is doing so much better that she even wanted to vaccuum for me today! Can you believe that? She cleaned off her art desk and everything. Two days ago she was falling down and today she is wanting to do so much more than she had been able to do. She even did some art projects this morning, making some fruit and icecream out of construction paper. It did my heart good to see her doing something she loves so much. She will still be staying at home for the rest of the year, as I forgot that steroids lower your immune system and we all know that she does not need to be catching anything right now with all she has been going through. Again, thank you all from the bottom of our hearts for all the prayers. God has heard those prayers and answered them. Marissa is so much better. Praise God. Kim, Steve, Marissa, Justin, Alex, Grace and Jade
PS PLEASE KEEP PRAYING FOR BRENDLE OVERLY, We all love that little girl so very much! Brendle, if you read this we send all our love and lots of hugs from Princess Jade XOXOXO
God Bless you sweetheart, we are all praying for you too!
Tuesday, May 20, 2003 6:56 PM CDT Hello Friends and Family
Some of you know what has been going on with Marissa these last few days and some of you do not yet, so we wanted to send a quick update.
Last Wed. Marissa was very tired and she did not get up until about 10:40 AM and was very tired all day. Thursday AM she seemed like her old self again, so we sent her to school. Thursday night she seemed off balance and complained of a headache. We wanted to keep her home on Fri. but it was her sharing day and she had promised her teacher she would bring her new puppies to school, so we let her go for the morning, but called the school to let them know what was going on. While she was at school, we called St Jude and told them what was going on. They wanted her seen ASAP by a neurologist locally. So we called our family doctor (kim's BIL) and he got Marissa in with the same neurologist that saw her while she was at Wesley in Wichita. He examined her Fri afternoon and guessed that it was most likely effects from necrosis from the radiation. Necrosis, is cells dying. We want the cancer cells to die, but do not want the healthy cells to die, but it is almost impossible to avoid and is a side effect from radiation. They ordered an MRI per the radiologist here and her doctor at St Jude and she had that done on Saturday afternoon. She is having greater difficulty walking and talking today and seems to be slightly worse everyday. She is beginning to fall down. It is like she is going thru this all over again. We have decided not to send her to school the rest of the year. She does not need the class to see her this way. It is hard enough already. The necrosis is bothering her walking, talking, swallowing and her personality. Right now, she is just not herself. The hosp in Wichita was to Fed Ex the MRI to St Jude yesterday and have it arrive at St Jude this AM, so they could compare the MRI done Sat to the one we just had done 2 wks ago at St Jude and somehow it did not get out via Fed Ex and went regular mail. Somehow we are not surprised. Anyway, they sent it out again today, this time by Fed Ex and St Jude should have it by 10 AM tomorrow. So we are waiting to hear from her doctor tomorrow to see if there has been any chg in her MRI or if they too, feel that it is the necrosis causing her problems. In the meantime, they have started her on a steroid that should help alleviate some of the side effects. They said we could see improvement within a couple of days. We are praying that it will work. It may also slow the necrosis and help to keep it stable. From what we have learned from the PA at St Jude, and our own research, the necrosis can last from around 3 mos. to 6 mos. and the damage from the necrosis can take months to repair and is a slow process. Necrosis of healthy cells is life threatening . We pray that it stabilizes very soon and does not get any worse. Effects from necrosis usually start to show up around 3 mos. after treatment ends and we will be at 3 mos. on the 26th of this month, so we are just before the 3 month mark and already we are seeing side effects. We of course are beside ourselves with fear, grief etc. We have no way to tell how much she will be affected by the necrosis. All we can do is to watch her closely and pray it doesn't get any worse. Which brings us to our prayer requests:
1. Please pray that the necrosis stabilizes soon and does not cause her anymore problems. And that the tumor continues to shrink and no more healthy cells are damaged.
2. That the steroids will help minimize the symptoms so she can do the things she loves to do, esp. draw and play with her siblings and friends and her animals.
3. That the rest of the family can get good rest and not worry so much that we can't sleep. And that we can all cope with what is happening right now to Marissa.
4. Please pray for Marissa's friend from St Jude: Brendle. St Jude has sent her home, as her cancer has spread everywhere and they say there is nothing else they can do. She needs a miracle and I know her parents need strength to get thru this. They are a wonderful family. She is such a sweet and spunk little girl, who touched our hearts deeply while we were at the RMH and St Jude.
5.That somehow I can afford to pay for some part time help in the office and with the house.
Thank you for your continued support, friendship and prayer. We need you all now more than ever as we face yet another bend in the road. By the Grace of God we will get through this, Kim, Steve, Marissa, Justin, Alex, Grace and Jade
Wednesday, May 14, 2003 6:34 PM CDT 5/6/03
Steve and I want to thank all of you for your patience, understanding and most of all, you continuous prayers for our family, especially for Marissa. We feel so blessed to have so many awesome prayer warriors praying for her complete and total healing. We want to apologize for not being able to always return your phone calls and emails as promptly as we should due to Marissa’s illness. These last four and a half months have been difficult, but we know that with the Lord on our side, we will get through this.
Marissa’s MRI update:
On Tuesday, we received a brief report on Marissa’s MRI on Monday. The tumor is the same size as it was two months ago, however, it has changed in appearance. There appears to be necrosis in the center of the tumor, meaning the tumor is dying from the inside out. We will get more details from her doctor on Wednesday. In addition, Marissa had a PET scan, had lab work drawn, and had physical and occupational therapy. She did great in PT and OT and they were just amazed at how well she is doing.
After Marissa’s first surgeries, she could not eat by herself, pull herself up in bed, feed or dress herself, let alone control basic functions. Her left hand hung by her side and her eyes were fixed unable to move much if any at all. Esp. on the right side, where she had hardly any movement at all. She had always loved art and she could not even write her own name, draw a simple circle or even a straight line. We saw her frustration in her face, even though her mouth and eyes could not move properly and at times she seemed almost expressionless. Marissa was once a social butterfly, mature beyond her age and we were watching her struggle to once again spread her wings and soar. We, as well as the doctors feared that she may never regain all she had lost and we often wondered what she would and wouldn’t be able to do for herself. We knew that before this all began, our daughter was articulate, self-assured and extremely independent. We wondered how she would do if she could no longer express herself or do the things she loved to do. We knew that she was our daughter still no matter what and somehow we would get through this, but feared how she would cope with all the changes that had happened to her body and mind. Her vocabulary had dropped to maybe a 3-year-old level. She vomited 2-3 times a day almost daily for over 9 weeks. We wondered when if ever it would stop, it was so hard on her and hard on us to see her so ill at the same time. Her eyes have greatly improved, her left side is so much stronger and she is able to do almost everything by herself again. Once a talented artist, now she is drawing almost daily and the detail has just taken off. She is almost totally back to where she was before surgery and in some ways you can see that she has this incredible insight that is way beyond her years. We will post some digital photos of her drawings when we have some extra time, which is very rare. She is teaching her younger sisters new songs that she has learned in Bible School, which she loves and always has. The songs she loves the most speak of Jesus’ love for all of us and how he suffered and died to save us. It is truly a miracle that she has come so far so fast. The doctors expected her to just hopefully remain stable and not get any worse and that they could keep her comfortable for as long as they could. At least they had some hope that she would improve a little bit here; at Wesley they encouraged us to do nothing and offered no hope at all. Well we all know that our God is so much bigger than the doctors, the nurses the radiation or Chemotherapy or any numbers or statistics and that Miracles do happen everyday if we only put our trust in the Lord and lean not on our own understanding. We feel so blessed to be witnessing this miracle and will continue to pray for complete and total healing for Marissa and believing that it is possible for her to beat this cancer completely.
Again we can’t thank you all enough for being there for our family as we face this illness with our daughter. We could not have done this alone. God Bless you all, Kim and Steve
The Lord is my strength, and my shield; my heart trusted in Him, and I am helped. Therefore, my heart greatly rejoices and with my song I will praise him. Psalm 28:7
5/7/03
Dear Friends and Family
Well we met with Marissa's primary doctor at St. Jude before coming home last night and the report is both positive and negative. We want to see necrosis, but at the same time necrosis can also cause damage to healthy cells while killing the cancerous cells. Right now she is stable and the tumor is not growing and we need to keep praying that the radiation effects will continue to destroy the cancerous tumor without destroying healthy cells in the process. We are grateful for all her progress and that she is stable, but had hoped for more shrinkage of the tumor itself. The doctors have to give you the worst case scenario, so it is hard as a parent to stay focused on the positive after hearing all the negative. Yesterday's report included: "When this happens you will be ready, when that happens we want you to be ready". Not IF. "Most patients will remain stable for 3-4 months or maybe 6 months to a year, or maybe a little longer". How can any parent prepare to see their child relapse and go through all of this again and to know that this time she will not have the radiation to try to destroy the tumor cells, only Chemo that has not been very promising in the past with this type of tumor. She can remain on the current chemotherapy as long as she remains stable, but if she relapses they will change her to another drug that has not been all that promising. We know that there is NO CURE for her type of tumor to date, but we also know that God can heal her and that a miracle can still happen. We pray for her to remain stable and to beat the odds. There are some cases, all but very few, that have survived this tumor. We will not lose hope that she too will be a miracle, but we are struggling with our fears of what will happen on a daily basis. It will be hard not to be constantly watching her every move wondering if she is relapsing, etc. It is already hard to say no to anything she wants, as we just do not know what tomorrow will bring. We will not lose Faith and Hope and we ask you to please continue to pray for her complete and total healing and strength and comfort for us as a family. We will be cherishing every day we have and hoping that she will beat this, but at the same time, never knowing when this day might be our last with her on earth. We are just enjoying seeing her full of life, love and laughter and love of our savior, seeing her drawing her beautiful master pieces, seeing her joy when she finishes each drawing is helping us enjoy the little things and cherish her even more than we already did. We think she understands that the tumor is not gone, but she asks no questions and will not talk about it at all. We wonder whether this is healthy, or whether we should just take her cues to take one day at a time and make the most of it and not make a big deal about it. I hate to think of her afraid deep down inside hiding her pain and frustration, worrying that she may not survive, as only a parent can. She has always been a giver and a blessing beyond compare and she continues to be both. She has touched so many lives, many who do not even know her and she continues to touch others. She is so brave and so innocent and pure. Only God has all the answers to what we will all face these next few weeks, months or hopefully years and we have to Trust that He will get us all through this and that HIS will will be done and that one way or another everything will be ok.
Thank you all again for your prayers gifts, words of encouragement, hats, shawls, art supplies, books, cards, monetary gifts, animals, etc., we still need your prayers, faith and belief in HIS Healing, to be able to face the road ahead of us as it winds and twists and wherever that road leads us, we Hope & Pray that we will be able to accept and understand HIS Purpose.
In Him, Kim and Steve
Tuesday, March 11, 2003 7:06 PM CST We are at St.Jude this week for Marissa's first appointments since completing radiation therapy on February 26th. On March 12th, she will have an MRI. Please pray for Marissa to be completely healed. God bless you.
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