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Friday, December 29, 2006 8:52 AM CST
Good Morning!
I am trying to be more dedicated to updating often. It has been such a busy time that it is hard to get in and get you updated information. This is, of course a nice thing too because it means things are uneventful for Miss Maryah and that is always good.
This next Tuesday Maryah will have scans. Dr. Slomiany has only ordered a CT scan this time around. He feels that is adequate since she's still doing scans every other month. He is also out on jury duty so he will be having to call and get in touch with me as he can. As always it will be hard to wait for the results.
The following week on January 9th Maryah will have a follow up visit with Dr.Clohisy to determine how her leg is doing and if the new antibiotics are making any difference. It is hard to tell from my perspective what is going on. I know she is getting around very well and has no pain for the first time in a very long time. That is the good news. We are now praying that the infection completely clears so she can get a new prosthesis and be on her way to walking and getting on with life in the 7th grade! There is SO much to do!
Some more fun news for the upcoming month is that on January 27th there will be a taco feed fundraiser in Maryah's honor. I am going to attach the flyer below because I cannot get it onto the picture section. Please feel free to join us for some food and fun! Our many friends at IHM-St.Luke's and dear friend Megan and family are putting this on. It should be a blast and we are ready to go and have lots of fun!!! I hope you will be able to join us there. I am going to attach the flyer below because I cannot get it onto the picture section.
Maryah’s Hope
Maryah Tift is a 7th grade student at IHM-St. Luke’s school. She was diagnosed with Ewing’s Sarcoma, a rare form of bone cancer, in 2004. She is a cancer survivor, however, she continues to struggle with health issues concerning staph infections in her prosthetic bones and is scheduled for many surgeries to come.
Friends of Maryah are planning a fundraiser on:
Saturday, January 27, 2007
4:00-8:00 p.m.
In the IHM-St. Luke’s School Dining Hall - 1065 Summit Ave.
If you’d like to help with this fundraiser, please contact Megan Barrett-Martin
at 651-634-4630 or mbarrett@mcgough.com
The cost for the Taco Feed is $ 10.00 per plate.
Donations above this value are more than welcome and greatly appreciated.
__________________________________________________________
PLEASE CUT HERE TO RSVP OR TO MAKE A CONTRIBUTION
O I (we) would like to purchase _______ plates for Maryah’s "Taco Feed" Fundraiser.
Enclosed is our cash or check made payable to: "The Maryah Tift Fund" c/o Megan Barrett-Martin
250 Dakota Street, W. St. Paul, MN 55118. Once your payment is received, your name will be
added to a list and you will simply have to "check-in" at the registration table on the evening of the event.
O I (we) are not able to attend. Please accept our donation in the amount of $_________
Last name First name
Phone number
THANK YOU FOR YOUR CONTRIBUTION TO THIS IMPORTANT CAUSE!
That's all for now! Happy New Year! I hope everyone has a safe and joyful weekend!
Love and Blessings,
Rachel/Mama
Monday, December 25, 2006 9:21 AM CST
Hey everyone!
Merry Christmas! How is everybody's morning so far. Mine is going great. We just got done opening gifts and eating a little bit of breakfast. I got a ton of stuff. The number one thing on my list was clothes from Hollister and I got it from "santa". It was a ton of clothes too so I was really excited. Morgan, Tori, and Libby got a ton of stuff as well. Libby got her own little play piano so Tori was excited because now Libby wouldn't have to use her piano. It was preatty funny. Today we are going to go back to our house get washed up a little bit and then we are going out to my aunty Jo's house. I am really looking forward to seeing her, my uncle and cousins. Well, I am going to go but I promised tori that she could write something quick so here she is. All my love. God Bless.
Maryah
________________________________________________________
merry chritmas everyone did everybody get to open thier gift yet? we did.
Saturday, December 23, 2006 12:01 AM CST
Yesterday Maryah called me from school and I initially thought she was crying - because she has called many times over the past three years with pain and agony in her voice -but this day she was laughing. She told me she just walked without crutches AND felt no pain! We talked through a few tears of joy and gave thanks to our God.
She is suppose to take it easy on her right leg because there is not a real-deal prosthetic yet - she only has a temporary spacer until her next surgery - but THIS is a great Christmas present. Though she has experienced many struggles in her young life, she has strong faith and heart and continues to meet challenges with her head held high.
Maryah looks forward to "walking" with you in this next year. Stay prayed-up so your footsteps are guided by the Great Spirit. Keep those who have passed on, and their families, close to your heart and mind. We send our love through this holiday season.
Peace,
Proud Dad and Ringman to "The Champ!"
Monday, December 18, 2006 1:01 PM CST
Hi all,
I'm back on my feet and though it was about time I get an update out here!
Thanks for checking in and for the prayers. I am feeling better after a bad week last week. Finally back to work and getting something done. It's such a difficult thing when you are used to going, going, going to be unproductive and useless while lying in bed. Although the most energy I could produce was just enough to get me from bed to couch and vice versa.
Anyway, enough about me. Maryah has started her new antibiotic and it is going well. Much better than the first attempt which landed her in the hospital. Dr. Clohisy will check in with Maryah the second week in January and see how things are going but she will likely be on this new antibiotic for a bit of time before thoughts of a prosthesis replacement come about. It's possible they will run this new antibiotic for about three months. Her knee is looking pretty good externally and she really is getting along nicely.
Maryah enjoyed her second Junior High school dance on Friday night and managed to be a dancing fool, even under current circumstances!
The plan is for Maryah to return to school for full days after the Christmas break is through so we will be working her up to that. Her stamina has been a little rocky but we think she can do it. It will be good for her to get back.
We are all busily preparing for Christmas and I am looking forward to the few peaceful moments that will come when we can remember the reason for the celebration and enjoy the quiet. Spending time with family is truly the best gift of the year. We are looking forward to it.
I hope that each of you and your families are enjoying the season and preparing for those quiet and joyful moments. From our family to yours, Merry Christmas!
Love and Blessings,
Rachel/Mama
Thursday, December 14, 2006 8:51 AM CST
Hello all!
I know it's been a while for an update...but as you all know, this is always a busy time of year!
Just wanted to ask for some prayers for Rachel. She is trying to fight off Bronchitis with flu, and being on the verge of Pheumonia. She is really feeling in the pits, and could use a little TLC from God!
Maryah has been doing well, but I'll wait and let her give you her own update.
Thank you all for the continued thoughts and prayers! We value each and every one of you!!
God Bless,
Auntie Jo/ Joanne
Friday, December 1, 2006 9:38 AM CST
Hello and happy December!!!
Seems a bit surreal that it is already December and just several weeks from Christmas. This year has just flown by and so many things have happened.
Maryah is still recovering very quickly and extremely well. Other than being a bit tired she is feeling well and her leg has healed nicely. The incision is healing well and she is up and around like a champ.
This week brought some minor complications after an attempt to switch antibiotics. Elaine (Nuna) and Maryah came to find out that the new antibiotic is not compatible with a couple of Maryah's other medications so it had to be stopped. We will now have to wait until the other meds are out of her system before attempting the new antibiotic again.
Hopefully all we are doing will help get rid of this infection. It has been rather chaotic with the antibiotic fiasco and then on Wednesday morning Maryah and Morgan were excited to learn that their new baby sister was born.
It is a busy time of year that is for sure!
We are thankful for all of those that continue to support us and help us get through the ups and downs of these sometimes crazy moments.
Hoping that the beginning of this holiday month brings joy and the love that being with family and good friends can bring.
We will keep you updated as things occur.
Love and Blessings,
Rachel/Mama
Saturday, November 25, 2006 4:13 PM CST
Hey Everyone!
Happy Saterday! We are having an awesome weekend so far. This morning Dan, Tori, Libby, Morgan, Mom, and I went to Macy's down town St.Paul to have brekfast with santa! We all had a blast. When we got home we put up the chirstmas tree. Now 4 hours later we still only have the first half of the lights up. HAHAHA! We are still having a lot of fun though. Well, I am going to go and help put some ornamints. All my love.
God Bless,
Maryah
PS. I hope you all had an awesome Thanksgiving!
Thursday, November 23, 2006 3:30 PM CST
Hey Everyone!
Maryah here. HAPPY THANKSGIVING!!! I hope you all are enjoying today with your family. My little sister 8Ib 9oz butterball was born six years ago today. HAPPY BIRTHDAY MORGAN! I LOVE YOU!
We are out here at my Aunty Jo's house for Thanksgiving today. Almost my whole family is here. We just got done eating so I thought I would write quickly but I think I am going to go and spend the rest of the time today with my family. All my love. Have a great day.
God Bless!
Maryah
PS. I am so so so thankful for ALL of you!
Wednesday, November 22, 2006 12:04 AM CST
Good Afternoon!
I am typing this journal from work....can you believe it? work? I expected that I wouldn't be back here for quite some time.
As I sit here I am reminded that if it weren't for Maryah's incredible strength and determination to beat this disease and all it's side effects into submission then I wouldn't be sitting here at all. Of course thanks to Nuna for staying home and being Maryah's primary caregiver so that I can come to work and earn a living.
Maryah has done EXCEPTIONALLY well. After the splint was taken off yesterday Maryah got up on her crutches and was trucking around the hospital, up and down steps and was not so patiently waiting to get sprung!
We finally made it home at about 1:30 and Maryah had a great appetite and was delighted to see her sister, have a home made dinner and sleep in her own bed!
Of course Mom was equally happy that we were all back in the same house and sleeping in our own comfy beds.
I am so truly amazed by the speedy recovery and how much easier this has been than what we thought it would be.
I believe that with the final "ok" from Dr. Clohisy that Maryah will go back to school next week.
She may need a little more time to heal the incision site but she should be able to go back.
So I thank all of those that have offered their help. The help I will need now will be much more limited than I anticipated. You are all so wonderful for offering. Jo Jo will be getting e-mails out to those she may still ask to help with some things but I will leave that part up to her.
Some of you may or may not know that our house was robbed last weekend before the surgery. I don't give too much attention to the negative in our lives so I didn't feel it necessary to put anything up here on the site. However, I won't have access to a computer at home for a bit until the insurance bit is handled so if there is no update, have faith I will get to it as soon as I get to a computer!
This week brings many thanks as we gather with our family. We will spend the weekend having breakfast with Santa and decorating our Christmas tree. These are all things I did not expect we would be able to do very easily this year yet here we go...
Thank you for your undying prayers, they have worked and we will need to keep them coming to get her through, for the infection to go away completely and so she can get a new prosthesis in a couple months.
Happy Thanksgiving! We wish you many blessings and a lovely holiday filled with family, love and good food!
Love and Blessings,
Mama/Rachel
P.S. Our 8lb 9oz Butterball was born six years ago tomorrow on Thanksgiving day! Happy Birthday Morgan! We love you!
Monday, November 20, 2006 3:37 PM CST
Good Afternoon!
Here I am again in the little computer room up here on the Peds unit at the U of M.
After some further good news I thought I would keep everyone updated since it will be more difficult to do so once we venture home...
yes....you heard me correctly home! We are going home tomorrow. Miss M is doing so remarkably well that each of her PT folks has come in and Dr. Clohisy today and said just how "awesome" they think she is doing.
Maryah went from such severe pain on Thursday/Friday that she couldn't even move to doing a full lap on her cruthes around two units and even touring the beautiful "Adopt A Room" that they have on 5B.
Miss M is down in the activity room making a cookie turkey right now. I was laying in her bed resting as a matter of fact!
So the word is that we are springin' this joint tomorrow and we'll be headed for home with smiles on our faces.
Dr. Clohisy is planning to come in before 11am tomorrow to remove Maryah's splint and take a look at the incision so he feels better and then he does not feel she needs another splint or anything on for that matter. He is so confident that her leg is secure that he doesn't think she even needs an immobilizer unless she feels safer with it on.
This has been one of few really positive surgeries and the good news just keeps coming.
Thank you for the prayers they are being heard!!! Hoping everyone is smiling as big as I am right now! What thanks we will give this year!
Love and Blessings,
Mama/Rachel
____________________________________
Hey everyone!
Maryah here! I am just doing a quick update. The doc just came in and took of the splint and know they are going to bring the discharge papers in and we are out of the place! YEAH YEAH YEAH!!! Hope you all a happy Thanksgiving! I am very very very thankful for all of you! All my love!
Maryah
Sunday, November 19, 2006 9:59 AM CST
Good Morning!
The sun is shining although I understand from those that have been outside this morning that the sun is deceiving and it is really quite chilly!
Maryah is doing well today. These past two days have been very rest and recoup focused. I believe we finally have the pain at a tolerable level and that we will even switch her over from IV to oral pain meds today which is one step closer to getting us home.
The nurses and docs have been great this visit. After our first horrible experience here I was anxious but it has been so much better. It's not St.Paul Children's but it is a very good hospital and Dr. Clohisy has been great to work with.
It looks right now as though Maryah will be coming home on Tuesday rather than tomorrow. This will give her plenty of time to get her up and moving around as best as she possibly can with the extremely heavy and uncomfortable splint she has from toe to hip.
Eventually in the next week or so they will be working on getting her fitted for a custom made removable splint. This will be helpful for mobility.
PT went much better yesterday afternoon and there was less anxiety about moving around. Maryah actually sat in her chair for about a 1/2 hour. That felt good since lying on her back in bed has been tough.
Today we will work with PT twice and one attempt will be to get to the shower to get clean! Yayyyy! She's ready for that.
This is all I know for now. Maryah is fighting on in her true spirit as she always does. Even though the first days have been less than easy she is better this morning and will keep getting better.
Thanks for checking in and I'll be back ASAP with another update.
Love and Blessings,
Mama/Rachel
Friday, November 17, 2006 12:52 AM CST
Good Afternoon,
Nuna has come to rescue me from the confines of that little hospital room. I am sitting in very comfy, warm room with computers set up for families of patients.
Miss Maryah had a very sucessful surgery. After all was said and done we got a late start at 11:15a.m. and surgery took just over four hours to complete.
Dr. Klohisy had done some research prior to yesterday and found that he could insert a rod of sorts into both the femur and tibea that the cement spacers could "wrap" around. This rod will keep Maryah's leg stable and she will be able to move around on her crutches which would not have been possible without the rod.
What does that mean? Well...it means that Miss M can get out of the house a bit and go to family holiday celebrations and she won't be confined to the house for 10 weeks as we thought she would be.
The infection was cleaned up and her leg left looking a bit more healthy than it did when they went in. When Dr. Klohisy came out of surgery he said how pleased he was with the outcome of the surgery and was smiling. He thinks Maryah has a better than 50% chance of keeping her leg and getting rid of this infection now. He also stated that he was glad to have done this surgery rather than the amputation because it went so well.
Maryah has had A LOT of pain I will say and that is being controlled a little better today. She is extremely tired and worn out but she is doing pretty well. She lost a bit of blood during surgery so she is getting a transfusion as I type to help bring her hemoglobin back up.
Physical Therapy is already going to be coming in just a few minutes to get her up on her crutches and sitting in a chair. This will be painful and challenging I am sure but she will "get er done" as always!
I am discouraging visitors yet today to get her through and get her comfortable. We will let you know when/if it is okay.
Thank you so very much for your continued thoughts and prayers. Leave all the messages you care to. I am going to print them off to read to Miss M tomorrow when she is feeling a little more "with it".
Good news to report and I am happy to say that she has come through with flying colors.
Love and Blessings,
Rachel/Mama
Thursday, November 16, 2006 9:05 PM CST
Hi all!
Just wanted to get a short message out...Zachary will be updating with full details.
Maryah came out of surgery, and is now in recovery stages. They are keeping her pretty sedated for the pain factor right now. She did fine and as I said, they 'll have details to come. All looks positive at this time. Thank you for all the prayers, and keep them coming!!! They are working wonders!!!
Love to all,
Auntie Jo
Tuesday, November 14, 2006 11:35 AM CST
Hello everyone!!
Maryah here! I am at school right now and we are having free computer time so I thought I would do a quick journal entry. I would like to say a quick thanks to everyone that has joined our "help list"! I feel more and more thankful everyday when I here about all the people that our taking time out of their day's to cook my family and I a meal or to help out with mo. It makes me feel very blessed to have you all in my life so thank you! I would like to ask you all one more big favor that is REALLY REALLY important to me. A really good friend of the family, Adam Prest was diagnosed with another type of sarcoma last march. He died on Friday leaving behind his beautiful wife Erin and his one-year-old son Adison. Please include this precious family in your prayers today...thanks!
Well, the sun is shining and I wish each of you a terrific day. I thank you all for your continued support, and gift of friendship. My family and I are extremely lucky for such love!!
God Bless you all!
Maryah
PS. CHEETAH GIRLS HERE WE COME!!!!
_______________________________________
I have to add just a little although Maryah's journal entry says it all!
After reading the above I can honestly say that now (if you couldn't already)you can see why I am so incredibly proud of Maryah. She has been an inspiration to me. She has reminded me that no matter what we go through there is always something to be thankful for and happy about. Even in the worst of times, sick times, crying times, yelling times, pulling our hair out with frustration times Maryah has remembered to be happy and keep everyone smiling.
So with this additional entry I would like to speak directly to you My ryah. You are my heart, you are my heart walking around outside of my body. You are what keeps my heart beating and keeps my heart joyful and smiling. You have blessed my life from the very first moment your father and learned of you. You have been an amazing daughter, an amazing sister, an amazing grandaughter, niece, cousin and friend. You're first reaction to cancer wasn't tears and anxiety it was a calm collected "well someone, somewhere must need to learn something from me". You set the stage for this production and for all of us to be able to follow your example and stare fear and not so great circumstances in the face and smile with faith in our hearts. When you were just a small girl your father told me you would speak to hundreds and they would listen. You have my full attention and the attention of all those that love and support you here and everywhere. I am listening and I look forward to all you have to teach me.
I will walk you through this, I will walk you through your first boyfriend, your first heartbreak, your first days on campus when you begin your college career. I will walk you down the aisle and walk you into the delivery room each time you bless this world with a child. I will walk with you through every experience that you will have the joy and sorrow of experiencing and I will be the proudest mother in the world. You have taught me and I thank you. You have taught Morgan to be the wonderful young lady she is turning into and I can't think of a better teacher. I love you with every ounce of my being and I will love you forever.
Ma
Tuesday, November 14, 2006 9:58 AM CST
Good morning!
Auntie Jo here. I would like to extend my thanks to all who have contacted Rachel and myself to lend helping hands! I was touched by the outpour of voices!!
I have sent an e-mail to those I know about, and would be happy to include any more that I receive. If you haven't gotten my address, it is: joannemartinson@msn.com
If you would like to call me personally, my phone is:
(763)753-4274
Please feel free to contact me with any questions or ideas, I am here to help as well. As most of you know, Maryah's surgery will happen this Thursday morning. Rachel will update with news as soon as she has it to offer. All the prayers you have are needed!!
The "helpers" will be contacted as we go after Maryah is home and stablized. As I have said, we will wait on Rachel to get the meal rotation going, and other help as well.
I would personally like to ask for prayers for my friend Adam Prest. He was diognosed with a type of Sarcoma last March. He also was able to meet Maryah and share some stories. He passed away last Friday, and will be missed by so many. James and I attended his visitation last evening and saw many pictures that described how full his short life was! He left behind his beautiful wife Erin, and one year old son, Adison. Please include this precious family in your prayers today...thank you!!
Well, the sun is shining, and I wish each of you a terrific day. I thank you all for your continued support, and the gift of friendship. My sister, Maryah, and Morgan are extremely lucky for such love!!
God Bless!!
Joanne/Auntie Jo
Thursday, November 9, 2006 12:38 AM CST
Good Afternoon!
I hope everyone is enjoying the recent lovely weather. Perfect time to put up Christmas lights right?
As I am getting prepared for surgery and recovery I have forwarded the many e-mails from Maryah's "help list" to my Sis, Joanne Martinson (a.k.a. Auntie Jo Jo).
Joanne will be contacting you after developing a meal calendar and letting each of you know what you can do to help and when! If you don't receive an e-mail and you were wanting to be part of "the list" please feel free to contact Joanne at joannemartinson@msn.com. She has been gracious enough to take this organizational piece off of my plate so I can turn my focus toward other matters that need my attention.
Next week will be the big week. Surgery is scheduled for Thursday and I won't know much until that day about expectations for Maryah's care and needs and what is to come.
I am feeling a bit overwhelmed as we come to this juncture and I am so very thankful for all of you that have offered your love, your support and your helping hands. You are all so wonderful and I truly don't know how we would get through without everyone pitching in.
In the midst of the upcoming challenges there is a blessing we are awaiting. Maryah and Morgan are expecting a new little sister who may make an early appearance in the days/weeks to come. Zach and I discussed that if there is a challenge to be had we seem to get them thrown our way in abundance. It has been said by both that we know that God only gives us what He knows we can handle but we really wish He didn't trust us so much!
Whenever the newest Tift addition arrives she will be welcomed by all and the new big sisters will be ecstatic! I wish Zach and Abbey well and know that we will all get through the challenges with smiles on our faces. Out of the challenges there is always a positive and it turns out she is on her way!!!
I will keep you updated as we go along. Thank you again ever so much. I know that I tend to gush but I cannot begin to thank each of you enough.
Love and Blessings,
Rachel/Mama
*** Another blurp from Auntie Jo... I hate to cut into Rachel's gush!! As above, please e-mail me with any offers of help, or questions regarding the setting up of a help schedule. This will not happen all at once. I will be getting info from Rachel as we go, and setting up as necessary. Many of you have listed specific times and days...thats great! Those that were general, that's awesome too!! I will start a rotation of meals once Maryah is home and all is somewhat settled. There are several people who have voiced that they can sit with Maryah. We will try to have a little get together to give some "training" on how to help with her at home. This may involve some transfering Maryah out of bed/couch to lavitory. If you are uncomfortable with this aspect...NO PROBLEM!! We have many who are offering, and there are SO many ways to help!! I will also be setting up a list of phone #'s for a "I need someone quick...I have to run out!!" These will be people who are close in distance and can help on very short notice. Some of you already let me know this was possible. If you haven't and know you live near Rachel...this would be of essencial need. There are things, as we all know, that come up suddenly. Rachel may need to make a run to the hospital/doctor...get a perscription...or need a gallon of milk.
I will contact ALL who e-mail to give you some initial info. So no worries...the help will be needed, and I/we are so lucky to have all those who have offered!!
If you haven't looked at the guest sign-in, Megan Barrett has braclets that say, "Maryah's Hope", in black and white. They are $5.00 and funds will go to medical care. You can reach Megan at mbarrett@mcgough.com or
(651) 260-1861. Thanks Megan!!!!!
Thank you again, and remember not to hesitate to send questions.
Be well & God bless
***Joanne/ Auntie Jo
Friday, November 3, 2006 2:51 PM CST
Good Afternoon and Happy Friday!
I am sorry that I have not updated this week but I wanted to get all my information together before putting anything out.
Maryah did have her scans this week (PET, CT and Bone). It wasn't until this morning that I finally learned that the scans are clear.
There is some changes in her pelvic area but Dr. Slomiany believes this to be due to her weight bearing on the left more than the right leg as well as her recent growth. He is not very concerned at this point but will take some plain film x-rays at our upcoming History and Physical appointment before surgery.
So thank God for this good news! It has been a long and sleepless week!
Next I would like to THANK everyone who has responded to my cry for help. I have received many e-mails, enough that I think we wil be able to eat for months with no need for me to cook and I may even be able to get out of the house for a break now and again. Morgan will be well taken care of as well I think.
I have not been able to respond to each e-mail as the week has gotten a bit overwhelming.
If I have not responded please know that I am ever thankful and so incredibly humbled by the outpouring of support I have received through your e-mails and phone messages.
I have started a "help list" folder to compile all of the contact information for those that have offered their assistance. I will be getting back to you all soon to let you know of the plan (if my brain will work long enough to get one made).
Thank you for creating a peace for me that only comes through undying support of friends and family. You are all such wonderful and giving friends and I can't tell you just how much it means.
Have a joyous weekend! We will be!
Love and Blessings,
Rachel/Mama
_______________________________________
Hello everyone!!
How are you all?? I am here at Dan’s house. Last night we went to see Santa Clause 3. Then we came back here and spent the night. Tori and I got some really exciting news last night. My “aunt” Megan called to let us know that when we go to The Cheetah Girls concert on November 15th that after the concert we get to go back stage and meet the cheetah girls. YEAH!! We were both screaming our heads off when we found out. I know my ma wrote this in her journal but all my scans came back clear! YEAH AGAIN!!! Well, I am going to go have a little breakfast with my family. All my love!
Maryah
PS. Have a GREAT weekend!!!!
Tuesday, October 24, 2006 2:35 PM CDT
Good Afternoon!
I wanted to get some further information out there regarding the information we received at the U of M on Friday.
Maryah did such a nice job teasing me about my age and expressing her thoughts about this looming decision I didn't want to get in here too quickly so as to give everyone a chance to read!
On Friday we met with Dr.Clohisy at the U of M. He is a colleague of Dr. Thompson. He will be the surgeon working with Maryah. He gave us some options to think over and to help us make a decision. Option #1 is to remove and replace the current prosthesis after some antibiotic treatment. Option #2 is to perform an above the knee amputation. Both require a lot of effort, time, monitoring and will take much physical and emotional toll on our family.
After praying for someone to come and give me an answer (fat chance right?) Dr. Thompson called me and gave me his "answer". He is biased to Option #1. He feels Maryah's got a good chance to salvage her leg and be rid of the infection. This was the answer I was hoping for as it is the way my "gut" was telling me to go.
Maryah has been wanting to amputate but I think mainly due to the fact that she feels it would be less time at the Doctor. This may not be the case at all and so there is much talking that has to be done to determine what each step will be.
As I understand it now Maryah will have the initial surgery to remove the infected prosthesis and insert a cement spacer in it's place that will be impregnated with antibiotics to be released to the tissue surrounding the area. This spacer will be left in for six weeks while she continues antibiotic treatment. At week six they will discontinue the antibiotic and aspirate and culture the area. If the cultures are clear and the infection is gone they will schedule a second surgery to insert a new prosthesis. For both surgeries Maryah will be in the hospital at the U of M for approximately five days. We will be working on effecient pain control while we are there. After the new prosthesis is inserted Maryah will begin physical therapy to learn to walk on her "new" leg again. She will walk with a limp for quite some time after this due to excess scar tissue and leg length issues.
During the time Maryah has the cement spacer she will be completely immobile. She will be staying at my house rather than Dad's due to accessibility. She will only be able to use her crutches for transfer. This will prove to be difficult since she is finally getting used to being active again. It will also be a long ten weeks of being mainly homebound.
The surgery is scheduled for Thursday, November 16th. We are putting it off a bit to be able to throw Morgan one heck of a FUN birthday party and so that Maryah can attend a concert she has been excited to go to for quite some time now. They felt it was okay to wait until 11/16 if she is comfortable and in no pain.
There is a lot to consider and we will have a lot to do to prepare for this surgery. There are many things I can think of at this point that will be needed. I have (if nothing else) learned my limitations over these past few years and I now know how to ask for help. So...here goes...I need lots of help! I am asking for anyone who is able and willing to e-mail me directly if you are able to prepare a meal while we are home for these weeks. If you are able to spend time with either Maryah at home or Morgan or both whether it is for a couple of hours or an overnight. If you are able to help transport Morgan to dance on Monday evenings or swim on Wednesday evenings, really just anything that might be of help while we are getting through this I would appreciate it immensely! Nuna Elaine will be helping during the day hours so Zach and I can still attend work as much as possible but she needs some relief too. When your e-mails come I will be making a list with phone numbers to call on you when you are needed the most. It has been hard to swallow my pride in the past but I don't think for one minute that we can do this alone this time around. I owe BIG for all the help you have all given and my time will come to help others but for now I am asking you all once again to rally and help our little family.
With the holidays coming it will make things all the more interesting but I know that we will face this challenge with as much zest as we can muster and that Maryah will be blessed as she always has been.
There is peace in this decision, there is peace in everything we do. Every "speed bump" we come upon is another learning experience and a time for us to build strength amongst our family and friends. There is strength in numbers. Thank you for being one of our "numbers". Thank you for building our stength.
Maryah will be having her CT, PET and bone scans next week so we will update you after we recieve those results and of course we are praying for the "ALL CLEAR" once again.
Thank you, thank you and thank you again!
Love and Blessings,
Rachel/Mama
Saturday, October 21, 2006 4:16 PM CDT
Hey everyone,
It's Maryah. We are out here at my Aunty Jo's house for my moms Birthday. She is ? Old (no one really knows). Some say 21 others say 31. She is acting more like 12 right now. She is sitting and playing video games. Crash Bandicoot...her favorite!!! HAHAHAHA.
My uncle Greg, Aunty Kim, cousin Kaitlyn & Arielle, and Grandpa Denny are here. We are having a lot of fun!
Yesterday I went to the doctor. He gave me some good news and some bad news. The good news is... well there really isn't any good news. The bad news is that the only options that I have are to put the antibiotic spacer and keep that in for about 6 to 8 weeks and then replace, or, do amputation. The good part about just replacing the prosthetic is that I will still have my leg but the bad part is that there is still that risk of the infection coming back. Plus If we replace it again I will have a lot of doctors appointments to go to and to be honest I am really sick of the doctors. We scheduled the surgery for November 9th so I have about three weeks to make up my mind. That is a lot of thinking to so. Well, I am going to go and spend the rest of the day with my mom. All my love.
Maryah
Wednesday, October 18, 2006 8:40 PM CDT
Wuzup,its maddie,
im hanging out with maryah again
today since after school.we are every
excited because it's a four day
weekend and hopefully we will have
the chance to party with our friends!
I hope to see everyone soon!LUV YA!
Tuesday, October 17, 2006 7:10 AM CDT
Good Morning,
I am writing with an update on Maryah's status. After talking with Dr. Thompson yesterday he feels that it is best to proceed with the removal of Maryah's femural and knee prosthesis. We will be meeting with the surgeon at the UofM this week to determine when, where, and the rest of the details of this surgery.
What we do know at this point is that they will remove the prosthesis and insert a cement spacer that has antibiotic beads that will release antibiotic into the tissues surrounding the area where the prosthesis was. This will likely stay in for approximately eight weeks and then there will be a second surgery to insert a new prosthesis.
The recovery will be lengthy and until we have a few more questions answered I am not sure just how difficult it will be.
Although Maryah is pretty frightened she is "rolling with it" just as best as she can and we are always keeping faith and looking at the positive side of things.
This is just getting Maryah one step closer to complete and total recovery.
I will update more again as I know more information.
I do have prayer requests and ask that you pray up extra hard for our friends Adam Prest and for our neighboors Kay, Megan and Allie. Their husband/father, Pat passed away this past week after a battle with his own health issues. I am certain that this family needs all the prayers they can get after such a devastating blow.
I wonder sometimes if God ever gets tired of me as much as I pray! It seems to be the only way that I can keep my sanity and feel the hope that is so necessary to keep going through each day.
Thank you for checking in. We are ever appreciative of your support and encouragement and of course your prayers!
Love and Blessings,
Rachel/Mama
Friday, October 13, 2006 9:53 AM CDT
Good morning!
Happy Friday the 13th! I always think of this as a lucky day as I don't believe in bad luck!!!
I wanted to get an update out there to let everyone know what is going on as far as I know it right now.
Wednesday Maryah visited Dr. Thompson who thought her knee definately looks infected. He did a small aspiration to culture the infected fluid/tissue. Those cultures should be done by today/tomorrow. I will hear from Dr. Thompson by Monday to determine what the final results are.
If the infection is the same strain of staff that we've been dealing with since June then obviously the IV antibiotics are not doing the trick. If that is the case Dr. Thompson will proceed with scheduling surgery to remove Maryah's prosthetic. In place of that she will have a temporary antibiotic spacer. This will release antibiotics internally to the surrounding tissue and hopefully resolve any infection that might be left. The spacer will likely remain in for about eight weeks and then they would do a second surgery to put in a new prosthetic femur/knee.
Although this is not the path we had hoped for if we are able to rid her little body of this infection it would be a good path to take. All in God's plan right? I have to keep reminding myself it is not in my will but Thine be done (thanks Papa Kingsriter). I will be certain to keep you updated once I know all the fine details. I should be back on Monday with more information.
Please pray for Maryah for full recovery of this infection and for the cancer to stay away. Maryah will be having her next set of scans in early November and we are continuously praying they show NOTHING. We need them to show NOTHING!
There is a long road ahead and each day brings challenges that we just have to roll with. I commend my lovely daughter on doing just that...she rolls with the best of 'em!
Hope that everyone has a lovely weekend! Keep warm! This early onset of winter is the pits. I wasn't ready!!!
Love and Blessings,
Rachel/Mama
Monday, October 9, 2006 1:40 PM CDT
Good Afternoon!
What a beautiful Fall weekend we just had. It was perfect weather for a trip to the Apple Orchard/Pumpkin Patch which is just what we did on Saturday. Maryah and Morgan enjoyed a wagon ride and picking pumpkins and snacking on apple goodies. The day was warm and windy and sun filled and overall just beautiful. Pictures are soon to follow.
This week Maryah will be attending some appointments with her docs to look at her leg. The work that Dr. Landis did looks very good but the purplish area that was once there is returning now again with some puffy spots. It doesn't look great and we are praying that it doesn't mean that the infection has taken over again.
The hard part of all of this is that when you think something might be better and getting on it's way to healing it surprises you with yet another road block. It is both frightening and disheartening. I am hoping for a full recovery still and praying for all of our sakes but especially Maryah's that she can be through with this and the infection will go away with no further surgery.
I will keep you updated as to what we find in the next week.
Thanks for keeping up with us and know we think of you often!
Love and Blessings,
Rachel/Mama
Wednesday, October 4, 2006 3:25 PM CDT
hola chicas and chicos
this is maryah's best friend maddie jones.
were just hanging out and having some
ice cream. its addicting. we had a fabulous
day at school. alright got to go and have some
more fun. see you soon!
LUV,
maddie
Friday, September 29, 2006 9:14 AM CDT
Good Morning!
I thought I better get an update in this week before it's over.
As you read in Maryah's entry she had a wonderful weekend last week. She was able to attend the Jr.High dance and spend over two hours there. She was also able to go to a friends house with some of her girlfriends to "primp" for the big dance. We spent some time out at Auntie Jo Jo's house and even had dinner with Uncle Greg and Auntie Kim, Kaitlyn and Arielle for a birthday dinner celebrating OLD Uncle Greg's 40th birthday!!!
Maryah returned to school on Tuesday (school was out on Monday) and she has been doing well all week. We also visited Dr. Landis on Tuesday for a follow up. He removed the dressings from the surgery and the drain they had left. Maryah's incision is quite lovely as far as incisions go and it is quite apparent that Dr. Landis is a plastic surgeon and knows a thing or two about the cosmetics of incisions. At that point he left the dressing off and the incision open to air to heal more quickly. He will see her again next Thursday and possibly remove some stitches if they are ready. Overall the surgery was a great success and we are so pleased to have had such a positive experience. It isn't often that we do when there is surgery involved.
I was very proud of our little trooper as she blazed the day with her typical strength and grace. She was even cracking jokes and making Mom and both Grandma Teri and Nuna laugh.
Maryah is making headway. We are thrilled. The continued prayers will involve much praise and thanks as well for continued healing and complete recovery.
I thank you for checking in on our girl daily. She loves to get your messages and I enjoy them as well. We will keep updating and filling you in as things go along.
We will discontinue antibiotics in a couple of weeks to determine if the staff infection is gone and determine where to go from there.
Thanks again and enjoy the weekend!
Love and Blessings,
Rachel/Mama
Saturday, September 23, 2006 1:01 PM CDT
Hey everybody!!
Maryah here. I had the best time ever at the school dance last night. I thought that I would only want to stay for an hour or so but when I got there I was having so much fun that I actually stayed for I think 2 in a half hours. Right now I am out at my Aunty Jo's house. We are having a relax day out here. in about an hour or so we are going to head up to St.Cloud because it is my uncle Greg's birthday on Wed so we are going to celebrate by going out to dinner. Well, I am going to hang out. All my love.
Maryah
Friday, September 22, 2006 10:32 AM CDT
Hey everyone!!
Happy Friday! The surgery went great! I actually don’t think it could have gone any better than it did. I thought yesterday that I might be able to try and go to school today but I am thinking not. I am way too tired. Plus tonight is the school dance and I have to rest up today if I want to go. Every year about this time there is a school dance. It is kind of like a home coming dance and when I found out I was having surgery I thought that I wouldn’t be able to go but then Dr.Landis said that if I promised to rest and stay in my wheeled chair that he would let me go so I am going to be doing a lot of resting today. Well I am going to go but I just wanted to tell you all that everything went great. All my love.
Maryah
Wednesday, September 20, 2006 7:52 AM CDT
Hey everyone!!
Today is the big day. I am really nervous but at the same time I can't wait to get this whole thing over with. The surgery is scheduled for 11:30 but we have to be there at 9:30 for prep. I am REALLY hungry. Well, I don't have a whole ton to say so I am going to go and rest a little bit before we have to go. I will write again soon. Probably not today but maybe tomorrow. All my love!
Maryah
PS. I am really sorry that I haven't written in so long. I have been really busy with school and trying to get caught up. I will do my best to try and write at least every other day. All my love.
______________________________________
7:35 p.m.
Mama here back with an update on the days events.
Maryah had a very simple and successful surgery. Thank you for those concentrated prayers today! Dr. Landis said after an almost two hour surgery that it went "very well" and he only had to do "mimimal repair" to close the wound. There was no skin grafting necessary and the pain will likely be limited.
The great team we worked with listened and cooperated very well in helping us to manage Maryah's pain and anxieties and we were able to keep her very comfortable. In her own words Maryah stated "This is the least amount of pain I have had after any of my surgeries". This was fabulous news since that was the piece that got us home tonight instead of having to stay overnight at the hospital!
Miss M is sleeping comfortably now with the help of her pain meds. She has finally filled that hungry tummy and is likely to rest a good deal tomorrow as well.
It will be very pleasant to stay home with her tomorrow and just be hear with her during her recovery. Resting, watching movies and spending time together is just what the Doctor has ordered!
Morgan is at her other Mom's house (Angie) tonight and she will be back home with us tomorrow. Both Maryah and I are looking forward to her return as we are missing her terribly tonight!
Thank you to all of you who have stopped in to check in, prayed and kept us in thought during this surgery and every day!
We appreciate you all more than you know.
Love and Blessings,
Rachel/Mama
Tuesday, September 19, 2006 9:45 AM CDT
Good Morning All!
What a beautiful Fall morning. The crisp air is a tell tale sign that the Summer has ended and we are soon to be preparing for the upcoming Winter months, holidays and SNOW!
We are also preparing for Maryah's surgery tomorrow. She is scheduled at 11:30 a.m. at FUMC. They have anticipated keeping her overnight for just one night however they may release her to home depending on how extensive the surgery is and how much pain she is having. We are hopeful that she will be able to come home right away and begin a quick and painless recovery.
Maryah is looking forward to her first school dance on Friday night which we think she may be able to attend for a bit in her wheelchair. We will have to pray that it can happen. I know it will make her happy.
So I am asking for lots of prayers for the surgery to be uncomplicated, less extensive, and for a pain free recovery. Please also pray for Maryah's nerves. She is feeling nervous and could use some calming.
Thanks for checking in and I will update ASAP after the surgey is complete.
Love and Blessings,
Rachel/Mama
Wednesday, September 13, 2006 8:17 AM CDT
Wow! Another update so quickly you ask? Absolutely! I must really be on a roll here!
Yesterday brought a visit to Dr. George Landis, Plastic Surgeon. We visited a very ritzy, fancy office where Maryah stated "I think I'm a little too young to visit a Plastic Surgeon". I then explained that we were not there for consultation on Botox, nose jobs or breast augmentations but that Plastic Surgeons do lots of reconstructive surgery to help people with issues just like Maryah's. We still thought the office was a little too fancy to be there with an issue like this. We're pretty simple people!
As it turns out Dr. Landis is an aquaintance of Maryah's Uncle Bob Tift and even leads the Boy Scout troop that cousin Danny is part of. That made this a little more familiar and comfortable for Maryah. Interesting how small the world becomes each and every day we move through this.
Anyway, Dr. Landis is shooting to get OR time at the U of M next Wednesday to perform a flap closure for Maryah's wound. This will require him to make a large incision around her knee and pull the skin/tissue/muscle up and over the open wound and suture it shut. If this would leave any thinning area around the back of the knee he would put a skin graft in place taking healthy skin from her thigh or calve. It sounds pretty straight forward. They are thinking of keeping her inpatient for one night for pain control although we can probably get a handle on that at home since we are so used to dealing with significant pain. We will see when we solidify all the details today/tomorrow.
I expect we will know for sure the day/time of surgery by this afternoon. Dr. Thompson may join Dr. Landis for the surgery although not performing any part of it. He would just oversee and make certain there is no issue with the prosthesis he is most familiar with. I am certainly always comfortable when Dr. Thompson is involved as he is truly an amazing Surgeon.
Going forward after the surgery we will continue the IV antibiotics for a couple of weeks, stop them and see what happens. If the infection has cleared we will proceed with lengthening the prosthesis and beginning some PT. If the infection rears it's ugly head again then we are back to looking into replacing the prosthesis. There are still options out there. Dr. Landis put it best that the wound vac dressing would be his "step 1" and the skin flap closure is his "step 2" and removing/replacing the prosthesis is his "step 5" so we've got some room to move.
My hope is that this approach is consistent with Dr. Thompson's approach. We will see I guess.
Today as I was checking in on my friends at the CB sites I noticed some words that rang true on Eli's sight. Vicki put into words how difficult it is during the "recovery period", how up in the air you feel not knowing what the next day will bring. This has been hard to put into words but she hit the nail right on the head. If you'd like to check up on Eli you can visit his site at eliknight1 (go through CB visit a site icon).
I also visited Adam Prest's site this morning. There was some discouraging news for their family this week and the last update I read brought dissappointment and you could clearly hear how down this little family was feeling. Today however the message is quite different as they have found their hope and their faith remains strong and they have a new plan.
I would like to ask all of you out there to say extra prayers these days for Eli, Adam, Jordynn, and all of our friends who have struggled through this journey. I ask special prayers for the caretakers, the parents and all those that feel the heartbreak and the uncertainty surrounding these beautiful survivors. They are survivors regardless because they fight the fight every day! They fight a fight that we will never know the strength it requires. I am proud of Maryah, I am proud to be her Mother, I am proud to have learned all that I have learned and I am humbled by the experiences that I have had in the past two and a half years.
I guess I am making up for lost time with this novel I have just written. Thanks for checking in and I will update with final details of surgery.
You are always in our hearts and in our prayers. Thank you!
Love and Blessings,
Rachel/Mama
Monday, September 11, 2006 10:11 AM CDT
Good Morning!
It has been far too long since our last update! I apologize that I haven't been more diligent in getting more information out here.
As you all heard Maryah's last set of scans showed no changes. This was good news and we were so thankful for it.
This week brings a new set of appointments and plans. Maryah will meet tomorrow with Dr. Landis who is a plastic surgeon recommended by Dr. Thompson. He will be consulting with us on treatment for Maryah's incision. The incision is still open after using a wound vac dressing for a couple of weeks. At this point Dr. Thompson would like to see Maryah have surgery to close the incision with a muscle flap. This is a procedure where they will take a section of muscle from another area and close the incision. Dr. Thompson feels this will increase the ability to clear the infection Maryah has been fighting. Once that is done and she has recovered from surgery there will also be a procedure to lengthen the current prosthetic to length it should be. I believe after that has been done that we will start intensive Physical Therapy to get Maryah off her crutches and walking again.
It seems that Dr. Thompson feels we can clear this infection and get her walking on her current prosthetic without there having to be a replacement at this point. This is also good news.
Maryah has started her new school year with flying colors. She is truly enjoying herself and is delighted to be back amongst her friends and doing schoolwork. It has been a change and a transition period for all of us involved. Zach and I, Morgan and Elaine (Nuna) are all trying to get back into some "normal" routine and find a way of doing things that still accomodates these new appointments, procedures, lack of stamina and the busy days that come along with school, the beginning of a new dance season and swim lessons for Morgan. Things are a bustle this Fall and I couldn't be more thankful and feel better about having all this on the plate. It's a nice feeling and I am sure just as nice for Maryah.
I will update again once we have dates set and we are better aware of what the upcoming surgery will bring. I hope that everyone is enjoying the start of Fall, the beginning of a new school year and the seemingly mundane tasks that keep us so busy...they are all a blessing!
Thanks for continuing to check in. We love to hear from everyone who continues to pray, leave messages, etc.
You are all in our thoughts and prayers. Thank you, for being here for us, for being supportive and for making this journey manageable for all.
Love and Blessings,
Rachel/Mama
Thursday, August 31, 2006 4:24 PM CDT
Hey!
Maryah here. How is everyone's day going?? I had the best first day of school yesterday. We didn't really do a ton but it was really nice to see all my friends. Yesterday we just stayed in my home room but today we started to switch classes. Today math was our first class that we went to and when we got in the room and got settled we had a math review. I thought I would do pretty good but not as good as I did. I got one let me repeat that one wrong. I was very proud of myself since I missed the entire 6th grade. Tomorrow I am going to have to miss school because of my scans. I am not really looking forward to them but like I always say ya gotta do what ya gotta do. Hopefully they will come back clear but I am pretty positive that they will. Well I am going to go and rest. I am very tired from such a long long day. All my love.
Maryah
Sunday September 3, 2006
Hello friends and family,
as I checked in today, I noticed Rachel and Zachary didn't have time to update before the holiday weekend. Thought I would let those of you know, who haven't heard...Maryah's scans from Friday were CLEAR!!!!
So onward our warrior girl goes!! Thank you to all who check in and follow the journey of this amazing family!!
God Bless,
Joanne/Auntie Jo
Tuesday, August 29, 2006 5:02 PM CDT
Hey everybody!
How is everyone?? Today is officially the last day with my grandma/nuna. I am going to miss her so so much!!! Tomorrow is the first day of school. This morning my mom and dad had a meeting with all of my 7th grade teacher's and they all said that they are looking forward to having me come for the first day of school. I am also looking forward to it as well. I am going to try and stay for the whole day. My grandma is going to come and pick me up a couple min early so that she can take me to my doctor's appointment with Dr.Thopson at the U. At the appointment he will just determine if he thinks that the VAC machine is helping at all l and if not what we do next. I think that it is helping. A lot. It is closing up really nicely. Well, I will write again tomorrow when I get home from school. All my love.
Maryah
Monday, August 28, 2006 10:33 AM CDT
Good Morning and Happy Monday!!!!
This will prove to be a very busy week for Miss M. Wednesday is the 1st day of school and will be a full day for Maryah. She will also be meeting with Dr. Thompson that afternoon to determine where we will go with the treatment of her infection at this point. She has been on the IV antibiotic now for almost 10 weeks. It's been a long time and we need to figure out a plan!
Friday will bring our next set of scans and a very EARLY morning. Maryah has to be at St. Paul Radiology by 7am for both a PET and CT scan. These will be the only two scans she has this time around. She doesn't much care for the PET scan because it is two hours of laying perfectly still. We try to help her relax and sleep through it though. We are again praying for clear scans and a GREAT school year!!!
Maryah has been using a wound vac dressing on her knee to help heal the open wound from surgery. It is working fairly well and seems to be helping that wound close up. I am optimistic that it will help in healing it completely. It's a great little machine. There is a sponge dressing that has tubing attached to it that uses a constant vacuum like suction to promote healing and new tissue/skin growth. Hopefully she won't have to be attached to it for too much longer as I am sure it will be a "pain" when in school.
Well, that's all for now. Hope you all have a fantastic week and a wonderful holiday. I'll update you with results as soon as I have them!
Love and Blessings,
Rachel
Friday, August 18, 2006 5:38 PM CDT
Hello everyone!
I was very nervous when I found the bump on my forehead but was even more relieved when I found out that that bump was nothing. I kicked cancer butt twice and I am not planning on kicking it again. Yesterday Megan called me to tell me that she received a newspaper for the community where she lives in West St.Paul and there I was on the front page. I thought that was the coolest thing ever. For those of you that live in Minnesota and around here you can find them in West St.Paul at a gas station or somewhere like that. The name of the paper is Sun Current. I hope you all enjoy it. Well, I am going to head out. All my love.
maryah
PS. Grandma Teri, when you read this I want to let you know that you are on the front page with me as well since we walked together. I am getting you a copy so don't worry about getting one. Love you!!!!
Thursday, August 17, 2006 7:38 AM CDT
Good Morning!
I thought I would get a quick update in before my day at work begins to get too hectic and I forget!
First off I should start by telling you that we took Maryah in to Children's on Tuesday for an x-ray and CT of her head. She had developed a lump on her forehead similar to the one she experienced last Summer which led to her surgery. When Maryah finally told me about it and I saw the lump it had been there a couple of weeks. We decided to wait until after Relay to get it checked out and not to make a huge deal of it by putting in writing on here until we knew all the facts.
Tuesday's tests brought all good news. The scans were negative and they see nothing they are concerned about. She may have just bonked her head or something.
This was relief that made our hearts sing. Elaine, Zach and I were positive it was an answer to our prayers and we are ever so grateful.
Sleep has been nice since there wasn't much of it before Tuesday.
Maryah and Morgan have since visited her Aunt Jan and Uncle Jim's cabin on Sugar Lake near Annandale, MN and visited with Aunt Shari and Uncle Jim from Arizona as well as had some R&R with other family.
We are all enjoying the last couple of weeks of Summer as much as possible, getting as much fun stuff in as possible.
Maryah will begin school at IHM-St.Luke's again on August 30th. The plan as it stands right now is that she will return on a half day basis for a little while until she can rebuild her stamina enough to make a full day.
There will be a lot to adjust to in this transition back to school and lots of catching up to do but I have faith in our girl that she will do it and do it well as she does most everything!
Thanks for visiting. Thanks for your thoughts and prayers. They will always be welcome. We love you all and wish you a fantastic rest of your Summer.
Love and Blessings,
Rachel/Mama
Sunday, August 13, 2006 9:36 AM CDT
Good Morning!
I am so sorry that it has taken me this long to update after a positively INCREDIBLE night at Relay For Life, South St. Paul.
First off, thanks to the DDFROGS for all their walking, raising funds and keeping the night going with all their energy and positive thoughts of HOPE.
The night was truly incredible! Maryah was on stage with just a few words to begin the survivor lap. It was a sight I will never forget! There she was in the lead of a group of many other survivors. There next to two other long term cancer survivors and Grandma Teri a 20+ year cancer survivor!
Miss Maryah walked on her crutches the whole lap 'round. She was offered a golf cart and she insisted that she would be walking the whole way! She did just that and I couldn't have been more proud.
Equally as proud, I watched Maryah light the first luminary bag as the ceremony began to light up the track with hundreds and hundreds of luminaries representing those fighting cancer, surviving cancer and who we have lost to cancer.
There were bags lit in honor of our friends including Eli, Jordynn, Adam and of course Maryah's Angel Maddie P.
It was a beautiful sight and I couldn't have had a better time.
We ended the evening with Maryah falling asleep on a blanket at the camp site. She made it until 10pm though.
I expect this will be an annual event for us going forward. I hope that we can get even more walkers and have even more fun!
If you were there along with us, thank you for all you are doing to raise funds to research cures for cancer! Thank you for making it a memorable night and we look forward to doing it again.
For those that couldn't make it join us next year! It is a sight to behold and a fun time to be had!
Hope everyone is having a great weekend!
Love and Blessings,
Rachel/Mama
Monday, August 7, 2006 2:46 PM CDT
Hey everybody!!
How is everyone?? Sorry I haven't written in so long. My summer has been very, very busy so far. I cannot believe that Summer is almost over. It has gone by way too fast. It feels like Winter is sooooooo long and then summer just flies by. I am looking forward to the Relay for Life on Friday. Just letting everyone know you can still come and join us at the Relay for Life without actually being on the "TEAM". Please stop out on Friday August 11th, and cheer us on, as we walk. At 7:00pm I will be leading the survivor lap as the honorary chair of the event. I will have a lady named Jody Delorit joining me; she is a ten-year cancer survivor. Yaaaaay for her!!! You can come and join the festivities, bid on silent auction item's and Spend some $ to help find a cure for this disease. I really hope to see you all there. All my love.
Maryah
____________________________________
Tuesday,August 8,2006
Hey!
Maryah here. How is everyone's morning?? I have decided that I am just going to start to update the page
everyday from now on. HAHAHAHA. Today I am spending the day at Angie's house. My Nuna is out of town so I decided to come here and see my favorite kids in the world! Tonight I am going to the Saints game with Megan, Bryan and one of my best friends Maddie. We are going to have a table set up there advertising the Relay for life. It should be really cool. Well, I am going to get going. Hope everyone has a great day!! All my love!
Maryah
____________________________________
August 9, 2006
Hey Everybody!
Happy Wendsday!!! How is everyone?? I am doing GREAT! The saint’s game was awesome last night. We raised about $400 last night for the Relay for Life just from walking around the parking lot where people were tale gating selling raffle tickets for a chance to win a car. Each raffle ticket was $5.00. Where you walk into the game we had a table set up advertising the Relay for Life. On the front of the table there was a big poster with my picture on it that Megan had made. She is really good at that kind of stuff. At the table we were selling raffle tickets and then if you paid $10.00 you could either make a bag in honor of someone or in memory of someone. The bags are for the track. We will put sand in them and then you put a candle in them and line them up around the track and they light it up when it gets dark. Well, I am going to head out and go play with the kids. I hope to see you all on Friday. All my love.
Maryah
Thursday, August 3, 2006 7:34 AM CDT
Good Morning,
Just thought I'd get a quick update out. Sorry they are far a few in between here. Summer is always a busy time of year but it is especially busy these days!
Yesterday Maryah visited Dr. Thompson and he took another look at the open incision on her knee. He feels that it looks a little better but will need to some encouragement to close completely as it will not do so on it's own. Dr. Thompson will be consulting with a wound care team regarding a vacuum dressing. If they feel this would work we may try that before surgically intervening. If they do not think it will work over the prosthetic then we will have no choice but to surgically go in and close the incision area.
He feels that the discoloration of her skin may start to look better after that is closed. She will continue the IV antibiotics for now and we will hope we are getting at this infection and killing it off.
Only time will tell what our plan of action will be. In the mean time we are praying that the infection clears completely and their is an effecient and relatively pain free method to get this leg back in good working order ASAP.
Maryah is working very hard with her tutoring and homework now. She is getting ready to move into the 7th grade in just a few short weeks. Maryah will return to IHM-St.Luke's for 1/2 days to begin until she is physically able to get back to full days. We hope that it will happen soon as she is anxious but she is limited in her stamina right now.
Morgan will be finishing her last week of Preschool this Friday and then have several weeks off before returning to Crossroads for KINDERGARTEN! I can hardly believe that my baby is going to Kindergarten. She is very excited for the transition and looking forward to going to school as an "all day friend". This should prove to be interesting.
Hoping everyone is enjoying the Summer. We are ever thankful for your continued presence here and your unwavering support! Thank you and be well!
Love and Blessings,
Rachel/Mama
P.S. I added the link to Megan's Relay For Life Site below
Friday, July 28, 2006 2:24 PM CDT
Hello everyone!
I am sending yet another invitation to join us for an event to raise funds for cancer research. My dear friend Megan Barrett Martin along with her team of FROGGERS will be walking the Relay for Life in South St. Paul on August 11th/12th.
Today Megan sent an e-mail to let me know that they have chosen Maryah to be the honorary chair representing children with cancer. We will be attending the opening ceremony, the survivor lap and the luminary lighting ceremony on the evening of the 11th. Who knows we may even be motivated enough to keep walking a few laps with the team. We will see how late Miss M can make it!
This is a great honor and I hope that if you have no prior plans on the 11th that you will put it on your calendar and join us at the track for a good cause. If you are unable to make it please visit Megan’s Relay for Life website at the link below to follow her progress and support the team in their efforts!
https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=128303&lis=1&kntae128303=A29CED08DEA448EAA43FB8AD68374C4E&supId=138290479&team=1365563
I am also including the schedule of events as I have found it for the night of the 11th.
Opening Ceremony 8/11/2006 7:00 pm - 7:30 pm
Survivor Lap 8/11/2006 7:30 pm - 8:00 pm
Luminaria Lighting Ceremony (the time is approximate as we will do the ceremony at dusk) 8/11/2006 9:00 pm - 9:30 pm
2006 Relay For Life Concludes 8/12/2006 7:00 am - 7:15 am
Thanks for your continued support. It has become our mission to support the research of cancer and someday keep other families from having to endure the struggles and tragedies that cancer can bring to families. We will be there to support all of our friends that we’ve met along this journey over the past two years. Those we have lost and those that are SURVIVING!!!!
We’ll look forward to seeing you there! Try to stay cool on this hot, hot weekend!!!
Rachel
Monday, July 24, 2006 9:48 PM CDT
Good Evening!
Well after a small down pour of rain the Reign in Sarcoma event took off! The event was a success with a very good turn out and lots of fun times being had by all.
Maryah and her friend Liz Kaiser hosted the picnic along with another Sarcoma survivor and ushered in many guests who came to enjoy the food and visiting. The auction and entertainment were also enjoyed by all and of course the carousel rides were a huge hit!
I myself enjoyed having another year at the event with friends and family surrounding us in every direction. It was just three years ago that not a one of us had heard of this event and due to our circumstances have become very familiar with Sarcoma and the RIS family.
I for one was proud to be at the event again this year. I was proud of the funds being raised to research Sarcomas so that those like my precious baby girl can be diagnosed, treated and cured effectively!
Maryah has had no evidence of cancer for several months. It has been hard for me to say that and is still hard now because of our fears but I felt proud this evening watching her and seeing how she's grown and changed and how much she has endured and the strength that has helped her build not only physically but strength of character. I am proud of her and I was proud to see her bare the symbol of cancer SURVIVOR tonight...the bright and brilliant golden sunflower worn beautifully over her heart. A medal of honor of sorts. It was a sight I will not soon forget.
To all of those who participated in any way tonight thank you for being a part of this wonderful event.
Enjoy your evening, be thankful for the rain and all of the blessings that surround us daily. A quote I read today "Count your blessings twice".
Love and Blessings,
Rachel/Mama
Thursday, July 20, 2006 10:20 AM CDT
Hey!!
Maryah and Kaitlyn here. How is everyone?? I am doing really great! I am out at my cousin Kaitlyn's house. We are having a blast!! We just got back from tennis. She did really great! Today at 11:00 my other cousin Arielle has tennis as well so when she is playing Kaitlyn and I are going to go and eat lunch. Yesterday when i got to St.Cloud i didnt sit until we got to Kaitlyn's house at 5:00. During supper we all watched Failure To Launch. It was really really good. After dinner I got my benadrill and I was knocked out. When my Auntie Kim got back we tried to set up Kaitlyn's bed but we had no batteries, so Kaitlyn had to bike to Super America and get four batteries. Well, I am going to go get ready to go. All my love.
Maryah and Kaitlyn
Saturday, July 15, 2006 3:55 PM CDT
Good Afternoon!
Hope everyone is staying cool on the balmy Summer day. We are hanging out at Auntie Jo's making cool treats while the little munchkins swim the afternoon away in the little pool. The heat doesn't seem to bother them much. I guess it's just us old folks that don't want to leave the house and melt!
Maryah had her appointment with Dr. Thompson yesterday and they were able to pull the drain from her knee. The fluid that it was producing had decreased. This was good news and a welcomed relief from Maryah. Although it was painful and Maryah was anxious the drain came out pretty easily and she is now on her way to healing the incisions and ridding her body of this infection.
The good news is that she can shower/bathe as normal finally and she is excited to test this out with an ok from the doc to go swimming for a bit which we will do tonight.
We'll keep you updated if anything changes and to let you know how the recovery of this infection is coming along. We should know more soon as we start planning how to resolve this once and for all. Keep praying for the infection to clear!
Thanks for checking in!
Love and Blessings,
Rachel/Mama
Wednesday, July 12, 2006 1:57 PM CDT
Good Day to all!
Just a quick update about the latest hill on the roller coaster! Last night Maryah fell on her crutches and we thought she broke her ankle. She did NOT fortunately as we found out after an ambulance ride to Children's ER.
She did however get a good bump to her lip and two front teeth leaving a slight chip in one tooth and a large fat lip!
The poor baby was pretty scared and in a lot of pain from what has been determined to be a bad sprain.
She has an air splint to help keep her ankle in place.
It was a bit of a scare for us all but we are thankful that there are no broken bones! Someone was watching out for her! Thank GOD!
Dr. Thompson will be removing the drain from her leg (they left it after surgery to keep fluids from building in the knee) on Friday.
That's all for now! Thanks for checking in and have a great day!
Love and Blessings,
Rachel/Mama
Friday, July 7, 2006 3:50 PM CDT
Good News!
The scans are unchanged! Everything looks good and we are in good shape.
There was a small linear change in the L4 Vertebrae that we will look at on plain film x-ray next week but they are sure that is from the stress Maryah has been putting on her back/body from being on crutches and not being able to walk normally. There are many changes in her bones since she has been on the crutches due to increased stress in other areas being used more to get around.
This is good news and we feel very blessed once again!
Thanks for checking in and have a great weekend!
Love and Blessings,
Rachel/Mama
Wednesday, July 5, 2006 5:57 PM CDT
Good Evening!
Well today brought another chapter to our story. Maryah had her follow up visit with Dr. Thompson. After changing Maryah's dressing, allowing us the opportunity to see the incisions made last Friday we spoke a little about what the plans will be for now.
Dr. Thompson would like to wait and take this infection day-to-day. He feels that since this infection has not been dangerous to Maryah's overall well being and is localized to one area of the leg/prosthetic it can be contained and treated. Dr. Thompson will continue to treat Maryah with IV antibiotics and continuous observation. If we are able to clear up the infection Dr. Thompson will look at replacing Maryah's prosthetic. With that replacement comes a major surgery as well as a future surgery to remove some scar tissue to regain mobility in the affected knee. If this works Dr.Thompson thinks Maryah may have a 75-80% chance of regaining mobility with her natural leg.
If the opposite happens and the infection is unable to be cleared then amputation is still an option.
As of today the cultures taken during last Friday's surgery show no sign of a)Ewing's and b)infection. This tells us that the IV antibiotic is working toward killing the infection.
Underneath the dressing the area on the knee that was once very purple and infected looking seems to have gotten better. The coloring was better and other than an open incision that needs to heal itself things overall looked considerably better.
It is with patience we will move through this. As we figured today (Nuna, Maryah and I) we will ride this through day-by-day and hope that they are able to get Maryah through this infection (beating it completely) and getting her back on her own two feet.
There is a lot to pray for, much to be hopeful for and we decided today to look at the "art of possibility" (thanks Nuna).
Today also began the first of two days of scans. Bone scan is complete and tomorrow morning we have PET and CT scans. There will be answers on the results of those scans on Friday. As soon as I get those I will update again!
Love and Blessings,
Rachel/Mama
Friday, June 30, 2006 10:23 PM CDT
Today Maryah had surgery to cleanse her infected knee. It turns out the prosthetic is badly infected and so we'll either need to replace the prosthetic - which means another major surgery and a long recovery - OR the leg may have to be amputated. We are waiting for next Wednesday when we meet with Dr. Roby Thompson for a better idea of what our options are going to be.
The good news is Maryah is home resting comfortably.
Maryah has not seen these (as I write this entry) but we cannot forget the gift of laughter, especially in hard times. Here are the top ten positive spins we are trying to put on the possibility of Maryah needing an entirely new leg:
#1) maybe THAT is the only way she'll be able to dance (because they think she may not ever have a full range of motion with her knee/femur prosthetic because of scar tissue, the compression fracture, and other issues like infections), #2) a shark bite wouldn't hurt that leg, #3) if she stubbed her right toe we could probably hear a really cool sound, #4) she could break firewood over her shin! (not that she likes to camp, but if she needed to...), #5) she could throw her foot and kick Morgan's butt without getting off the couch (I like that one because Mo can frustrate Maryah so much that I can see Maryah actually doing that), #6) she could ask sincerely "Um, where's my leg?", #7) at least her right foot wouldn't get cold, #8) she could ask a store clerk, "I pay half price on these pants, right?", #9) she could say "you two-legged people are such dorks", and #10) she could add a whole new meaning to "stop pulling my leg".
We went through - and will continue to go through - the full range of emotions. But we are thankful we only have this to worry about and not something crazy like cancer! Its only a leg.
Since Maryah cannot walk on her own two feet, walk for her. Carry her with you when you walk; the walks that are either activity related and/or spiritual in nature. Stay prayed up. She may not know when you are praying, but she knows that you are praying and her spirit thanks you...and so does the GREAT Spirit.
Peace and God bless,
Zach/Dad
___________________________________
Sunday I brought Maryah and Morgan to church at the Cathedral, then we walked around in back of the alter and prayed in front St. Therese. Maryah was in tremendous pain but still - on her own accord - she insisted on kneeling on one leg while her right leg was extended...throbbing. She knelt, folded her hands in front of her face, closed her eyes, and quietly prayed. She then did the sign of the cross, turned, grabbed her crutches, and pulled herself up!
Father Peter - from Nigeria - spoke of Bishop's there who have to turn people away from the seminary because they cannot cover the costs of schooling, housing, food, and books. Afterwards Maryah spoke with Father Peter because she wants to help sponsor someone to become a priest. We exchanged information and will be following up with Father Peter.
This reminded me of when Maryah was five years old when she said, "Dad, I want to be a priest". I did not tell her "no Honey, you cannot be a priest because you are a female". I told her I would support her 110 percent. I love God and I love the church but I do not love prejudice. No man can justifiably tell a woman - especially Maryah who has suffered more like Jesus than anyone lese we know - that she cannot do something because she is a female. I do not intend on turning this site into a radical website, however, I do intend to keep working with Maryah to work towards ending injustice. How powerful would it be if she showed patience and forgiveness to Catholic church leaders by sponsoring a man to become priest since she cannot? Furthermore, what if they recognized her struggle and allowed her to become a priest because of her love for God? One person can change the world...keep praying and working hard to do what God puts on your heart to do!
Wednesday, June 28, 2006 7:37 PM CDT
Good Evening!
Well the news of the day after our visit to Dr. Thompson this afternoon is that Maryah will be having surgery. She is scheduled for surgery at the UofM Riverside at 5:30p.m. on Friday evening. They are planning to make a 5-6cm incision to go in to her knee and attempt to "clean" the area and the prosthetic to rid the infected matter.
I am PRAYING my fanny off that we are going to knock this thing out after this surgery. She seems to not be getting the proper coverage with the IV med we're giving.
Maryah is a bit nervous but she is taking the news well and is praying up to get this done with.
The plan is that this will be outpatient surgery and she will be home on Friday night. The only thing that would require her to remain inpatient is if they were to find any "surprises" upon visually looking at the infected areas.
This is all a bit hard to swallow. It's hard to keep going up and down this rollercoaster we are on and my faith is strong but I am feeling a bit overwhelmed by it all. I am sure Maryah is too.
We will keep you updated with all the news of the surgery after we are through it. In the mean time please PRAY, PRAY, PRAY.
Next week will be the next set of scans as well so we have a couple of weeks worth of praying and updating.
Thanks for checking in...we'll keep you posted!
Love and Blessings,
Rachel/Mama
Thursday, June 22, 2006 3:16 PM CDT
Good Afternoon!
Sorry for the length of time between updates! Things are bustling about at the Tift household. Maryah, Mo and I spent a LOVELY weekend at Uncle James' family lake cabin. We had a great time indulging in some nice fresh air, swimming, boat cruising and sunset cruises on the pontoon. It was truly a wonderful weekend and we are so thankful to have had the opportunity to be up there.
Maryah has been busy this week, working hard with her tutor and reading as well as being a fabulous big sister. Maryah is so great about helping Mo with her homework and gently encouraging her when she gets frustrated! It's such a neat site and of course a pleasant change from the sibling bickering!
Maryah has still got this infection and after four weeks of IV antibiotics it doesn't seem to be changing much. We will take Maryah to the UofM tomorrow for a quick visit to check on some changes with the spot on her knee. Hopefully they can determine that it is nothing and things are progressing as they should.
We are praying diligently that this infection clears up as quickly as possible so we can go about the business of healing and getting ready for the upcoming school year.
Keep those prayers coming please!!!
I will keep you updated as we learn more about the infection.
Hope everyone is enjoying this beautiful Summer.
Love and Blessings,
Rachel/Mama
P.S. Please as always keep our dear friends Jordynn, Eli and Adam on your prayer lists. They are still working hard through their own battles.
P.S.S. Our dear friend Megan sent me this website today to look at. It's a Mom of a girl who had cancer who makes her own soaps, lotions, etc. Megan ordered some for the RIS event and I have personally smelled them! They are FABULOUS! Take a look at the site and maybe we can continue to support Cancer research and a Mom whose been through the ringer! www.edgeofthetub.com
P.S.S. Elaine mentioned that there is a special on Channel 2 (PBS) and then again on Channel 17 (local cable) called A Lion In The House that follows five children/families going through Cancer. I think they may be on tonight, Friday, Monday and Tuesday. I am still searching the network for the times and such but thought I'd throw it out there incase anyone wants to tune in.
Hey it's Maryah here!!
How is everybody?? I am not going to be very long but I just wanted to ask a favor of everyone. My friend Jesse's aunt was in a motorcycle accident and is in pretty ruff condition's please please keep her in your prayer's. Her name is Jessie. Thanks a ton!!
Maryah
Monday, June 12, 2006 9:00 AM CDT
Hey everyone!!!
How was everybody's weekend?? Mine was great!!! I spent this weekend out at my Aunty Jo's house. We had such a good time. On Saturday we went to the Pioneer Days parade out in St.Francis. It was really cool! It's kind of like the Grand Old Days parade in St.Paul but much much cooler! After that there was a carnival that was a block away from where we were so after the parade we went to the carnival and had some dinner and then went on some rides. It was really really really fun!! Then that night my sissy Morgan spent the night over at my Aunty Jo’s house and my Mom and I went home because we both wanted to sleep in our own beds. On Sunday (yesterday) we went back to my Aunty Jo's house and went to my cousin's graduation party. It was really fun. I got to see all of my family and even met some friends of the family. After that we went to one of my Uncle's very good friends fundraiser/benefit. We had a really good time there too. It was really crowded there so we only stayed for a little bit. He has a sarcoma to like me. Or I should say like I used to. I don't know the name of his cancer but I do know for sure that it is a sarcoma. His kind of sarcoma effects the muscles and the nerves and from what I hear it is very painful. Please keep him in your prayers. He needs them a lot. His name is Adam Prest. I see that my Mom wrote about the news about me not being able to go to Disney. I am still pretty bummed out but there is still some fun stuff that we are going to do this Summer. For instance instead of going to Florida on Friday we are all going up to my Uncle's family cabin. All meaning my Mom, Sister, Aunty Jo, Uncle James and my cousins Dorian and Shayna. It is going to be so fun and I know that I am going to have an awesome time there with all of my family. Even though I am still pretty bummed out about not being able to go to Disney I am excited about being able to stay home with my family and not have to be away for so long. I would have been gone for six days. That’s six days away from my Mom, Dad and Sister. That would have been really hard but I don’t have to worry about that anymore since I am not going. Well I hope everyone has a great Monday!! All my love. God Bless!
Maryah
Friday, June 9, 2006 2:32 PM CDT
Well....the rollercoaster ride continues. Did I ever mention that rides make me sick!!!!
After talking to Dr. Thompson as well as another Hem/Onc Doc and an Infectious Disease Doc it has been determined that it is NOT in Maryah's best interest to take this trip to Disney.
Maryah is really pretty dissappointed as to be expected. She was hoping to go but it is too much of a risk to go at this time.
So we will have to plan another trip some time after she is healed and all infections are cleared up.
I trust and put my faith into these Doctors and when they are uncomfortable letting her go I understand and trust that completely. Maryah's health is just too important to take any unnecessary risks.
So although this was the downward hill of the rollercoaster we will soon be on our way back up the hill for another ride!
We will keep screaming and laughing and smiling the whole way! I guess you just have to ride until you are used to it and find a way to enjoy it the best you can!
Thanks for checking in. We love and thank you all!
Love and Blessings,
Rachel/Mama
Tuesday, June 6, 2006 10:23 AM CDT
Good Morning!
We just left Dr. Slomiany's office where Maryah had her appointment this morning.
We are currently looking at two different strains of Staff infection that we need to treat. They are still working at the UofM to determine the sensitivities of these strains and determine the best course of treatment.
We had been doing three IV courses of Vanco per day and have now gone to twice per day which will ultimately make things easier on all of us!
The best news of the day is that Maryah will still get to take her trip to Disney!!!! We were quite dissappointed with all this news on Friday and the thought that with IV meds Maryah would not be able to make the trip. Dr. Slo has figured out that if everything remains stable from now till Disney he can figure out an oral antibiotic for her to take just for the six days of the trip.
Maryah was thrilled with this news.
Tomorrow brings another visit with Dr. Thompson at the UofM and we will see what he has to say on his end as well. I am certain he will support the decision to send her on this very BIG trip and we will make it work whatever we need to do.
So thank you all for your continued, concentrated prayers they are still helping.
We so appreciate all the love and support that surrounds us.
Have a wonderful day and enjoy the beautiful sunshine.
Love and Blessings,
Rachel/Mama
Saturday, June 3, 2006 10:32 AM CDT
Good Morning!
We have a beautiful weekend ahead of us with this lovely weather.
Today Maryah and Morgan will be heading over to Mendakota Park in Mendota Heights to dance with the DDs crew and join in on the parade with the rest of the dancers.
Maryah had her visit to the UofM yesterday where Dr. Thompson did a knee aspiration to determine what is going on with Maryah's knee.
Dr. Slomiany called last night with some preliminary results that show Maryah has a rather serious infection in her knee and quite possibly in her prosthetic hardware that broke through the antibiotic she has been on for some time.
At this point the results are preliminary but enough to start her on a regimin of IV antibiotics at home for a minimum of six weeks.
Once we have more information from the culture being done on the sample we will know where exactly we go from here.
So there is a hurdle and it's not exactly an easy hurdle but it is not an impossible hurdle.
We will be keeping you updated as we go along here. We will definately have more answers once we meet with Dr. Slomiany on Tuesday of next week.
Keep on praying we need the prayers.
Have a great weekend! Enjoy the weather and HAVE FUN!!!!
Love and Blessings,
Rachel/Mama
Wednesday, May 31, 2006 9:35 PM CDT
Good Evening!
Just a quick update to give you the latest and greatest with our Miss M.
Maryah had her 2nd visit with Dr. Thompson at the UofM today to check on her knee. He felt her knee looked infected and he will be performing a needle biopsy (likely on Friday) to determine if it is in fact an infection and what type.
We are praying right now that this can be determined and if it can be easily fixed.
We will keep you updated. Please keep praying that this is just a small hurdle easily jumped!
Thanks for keeping up with us. Your support means everything!
Love and Blessings,
Rachel/Mama
Monday, May 29, 2006 11:55 AM CDT
Happy Memorial Day!
Hoping everyone is enjoying the warm weekend and time with family. It has been a busy weekend for the Tift girls. We spent some time in Little Falls with Uncle Greg, Auntie Kim, Kaitlyn and Arielle. After returning we spent some more time bar-b-queing with family here in the cities. Today is just a mello day with some time to get prepared for another busy week.
Maryah had her visit at the UofM with Dr. Thompson last Wed. He will continue to see her once a week to watch her knee and monitor the problems she is having. He took some x-rays to check the progress of the compression fracture that occurred last Fall. He will see how that has progressed and if it has healed at all since then. We are hoping now that Maryah is finished with Chemo that it will heal completely.
So added to the weekly regimen of tutoring and other appointments we add one more weekly appointment with Dr. T. We really manage to stay busy. Thank goodness for Nuna or Zach and I would never make it to work!
There is much to be thankful for and we are happy that Maryah is regaining her strength a little more each day. Although she continues to be pretty tired she is working hard to get back to where she needs to be.
Thank you for continuing to check in on us. It is truly humbling to have the amount of support and caring that we do around us daily. It makes the road that much easier!
Enjoy the holiday and the beautiful weather!
Love and Blessings,
Rachel/Mama
Tuesday, May 23, 2006 12:18 AM CDT
Hey everybody!!!
I am so sorry I haven't written in so long! I have been so busy lately with tutoring and all of my appointment's I haven't had any time to do a journal entry so I am really sorry about that!!! Yesterday Angie's (our daycare lady) was closed so Morgan spent the day with my nuna and I. we had so much fun together!!! I love it when Morgan gets to spend the day with me! Today my nuna's is closed. HAHAHAHAHA!!! We gave her two days off today and tomorrow so that means that I am at Angie's house for the next two day's. I love coming to Angie’s house! I get to see all of the kids and get to play with them. They are all so cute and so fun to be around. I love them all so much and that's including Angie and Mark. Tomorrow I have an appointment with Dr.Thopson so that he can look at my knee. It has been hurting me a lot lately and the side of me knee is dark red and all the skin is peeling off and it itches worse than a bug bite, so tomorrow we are going to get it checked out. Oh my gosh, I think I forgot to tell you guys where I am going. I am going to Disney world with my dance studio! I am looking so forward to going! I am going to have a blast!!! I am even going with out my mom and dad and Morgan. I thought that was pretty cool. Only 24 more days's left till I go! Yippee!!!! Well I am going to go hang with the kids. All my love! God bless!!
Maryah
Tuesday, May 16, 2006 9:20 AM CDT
Sorry that it has been so long since the last update. The past weekend was very busy and lots of fun for Maryah.
The weekend was spent at the Hilton MOA where Maryah was given a two night stay and a gift certificate to the MOA. Friday night Maryah had her birthday party (pics to follow soon). Ten friends strong we celebrated with pedicures, facials, pizza and birthday cake. Along with those things there was A LOT of laughing and fun!
Saturday was spent at the MOA for dinner at the Rainforest Cafe and a little shopping to boot!
Maryah watched her good friend Maddie dance at recital on Sunday and by 6pm she was asleep on the couch after a weekend on the go!
This week brings us to plans of tutoring, stepping the academics up a notch, getting pool PT scheduled on a regular basis and discontinue some of the many medications taken daily.
We are on to the next phase and that would be planning for the future.
Maryah has been invited to join her dance studio (thanks to Megan and Dianne)in Disney World for competition. Maryah will make her venture mid-June and enjoy some vacation time without Mom, Dad or Mo and just get to be a kid along with the other dancers. We are very excited she has this opportunity!
Hoping everyone is doing well. Thank you for your continued prayers. We will need them in order to make certain that this beast stays away.
Love and Blessings,
Rachel/Mama
Thursday, May 11, 2006 3:49 PM CDT
Hello Family and friends!
Auntie Jo here to give you all the the second batch of terrific news! The bone scan that Maryah endured yesterday has been confirmed CLEAR!!!!!
Our girl has come through with flying colors!!
Rachel was not able to get to a computer quickly enough to get the message out to all of you, so I'm happy to be the one to announce this most marvelous news!
Thank you God!!! Thank you...Thank you...Thank you!!!
I know, as I spoke to my sister...we were jumping up and down, and dancing with joy. For God has heard the outpour of loved ones prayong in faith to restore this precious angel back to full health. I, as I believe you all will, keep Maryah and family in prayer that this beast remains conquered for good!!
Maryah or parents will update very soon. Thank you to each of you for all the prayers, God was listening!
Much love and Blessings!!
Auntie Jo/ Joanne
Wednesday, May 10, 2006 4:22 PM CDT
The PET and CT scans are definitively ALL CLEAR! Maryah is having the bone scan done as I write this entry. We will have those results by tomorrow!
PRAISE GOD!!!!!!!!!!!!
I will update again as soon as I have word on the Bone Scan!
I am too excited to write any more!!!!!!
Thank you, thank you, thank you, thank you!
Love and Blessings,
Rachel/Mama
Monday, May 8, 2006 1:54 PM CDT
We had the PET and CT scan this morning with a small gliche in that we can't do the Bone Scan until Wednesday because she has already had radioactive dye once today. But this is all okay...because.....GLIMMER (as our friend Vicki says).....PRELIMINARY CT SCANS LOOK ALL CLEAR!!!!!!!
Keep in mind we have not had them read by a radiologist yet but Dr. Slo and I looked at the films together and he did not see anything that jumped out at him and he could not see the spots on her lungs that were there previously. We will have definitive answers very soon but I think our prayers may be answered. PET scan results will not be ready until tomorrow. I am just shaking right now. I can barely type. I am so HOPEFUL after hearing this.
KEEP PRAYING for the definitive to confirm what we've already heard.
THANK YOU GOD, THANK YOU!
Love and Blessings,
Rachel/Mama
Sunday, May 7, 2006 9:07 AM CDT
Well, it was 12 years ago today that I became the very proud Mother to my black haired 7lb 11oz beauty. She came into this world with a spirit that touched Zachary and I deeply and has grown and continued to let her spirit shine through to many others over these 12 years.
It goes without saying that I am so very proud today as I am every day to have been blessed with such an amazing child.
Today we will celebrate with a birthday brunch at Nuna's house and enjoy the remainder of the beautiful day celebrating all throughout.
We are still praying and asking for those concentrated prayers for tomorrow's scans to be clean and clear. The first scans will begin at 7:55 and last over 2 hours. The bone scan will begin at 12:45 and go for over an hour. I give times so that those concentrated prayers can come right at the time she will need them. I read Lucy's guestbook entry and I believe when she says she knows that God will be with Maryah during those scans and make certain that they are clean.
Of course we are getting all geared up because next weekend is truly the big weekend party where Maryah will be having all of her school friends to the Hilton MOA. Big stuff! It should be lots of fun!
Looking forward to a good and happy week filled with good news and anticipation only for an AWESOME birthday party.
Thank you all again for your continued support. I never feel like I can say thank you enough.
Enjoy the beautiful day we've been given.
Love and Blessings,
Rachel/Mama
Tuesday, May 2, 2006 12:11 AM CDT
If you didn't get a chance to read Maryah's entry from her final day of chemo last week please look back. She is truly thankful as are Zachary and I for all that you have done for us to support and keep us going through difficult times. Maryah is certainly right when she says that we wouldn't have been half as strong without all of you, our supporters!
Maryah is at clinic today getting a blood transfusion as her Hemoglobin was a whopping 6.4 yesterday. She will be there all day for two units of blood.
I am really here and doing this journal entry to request concentrated prayers for a couple of things.
1. Our good friend Eli is going through a tough time over at Children's Minnepolis as he is on Day 5 of his Stem Cell Transplant. He has received some very high doses of chemo and his little bod is trying to recover. Please pray for him and for his family. They need strength, resiliance and peace right now.
2. Maryah will be having a full scope of scans on Monday next week. We will be doing a full body CT and PET scan as well as a bone scan. We need concentrated prayers that these scans are clear and that she is on her way to full recovery and healing.
I know that when we pray in numbers He hears us. Please stay with us through this leg of the journey. We need your prayers now more than ever.
Thank you all so very much. You might never know just how much you each mean to us.
Love and Blessings,
Rachel/Mama
Friday, April 28, 2006 4:52 PM CDT
Hey Everyone!!
I am officially done with chemo. YEAH!!!!! I am sooooo excited! I know that this sounds really weird but this was the best day having chemo ever. I have actually been feeling really well this past week. No throwing up, no pain in my leg, it's been an awesome week so far. I definitely have a lot of celebrating to do!!! I am really looking forward to summer. I will have nothing to worry about no meds, no chemo no nothing. Even though I miss school a lot it's going to be really nice having the summer to recover instead of having to go back to school right away, it will give me plenty to have fun, recover and get all caught up in school so I am ready to go to the 7th grade. Well I better get going. I want to say a very very special thanks to all of you for helping get through this. If it weren't for all of you guys and all of everyone's positive attitude I really honestly think that I wouldn’t be as strong as I am today. Thank you all so much. All my love! God Bless!
Maryah
Tuesday, April 25, 2006 8:48 PM CDT
Good Evening!
Maryah started her last round of chemo this week. Her counts were good and she was in good spirits to get started.
We have made a small side trip to Children's ER tonight. Maryah was experiencing some chest pain and shortness of breath around supper time so we brought her down to get everything all checked out.
Right now we are just SLOWLY waiting for the doc to come in and give us report on the chest x-ray and EKG. We are thinking that this was just a mix of REALLY BAD acid reflux and panic that came with the experience of chest pain. Now that Maryah has had some Maalox and some time to calm herself she is doing much better. Sitting up drinking some apple juice and watching Scooby Doo.
I am of course hoping that we will get the results quickly, all will be well and we will be on our way to our nice cozy beds for a good night sleep before tomorrow's clinic appointment.
I will keep you updated or encourage Maryah to update herself tomorrow.
Hoping everyone is enjoying the beautiful Spring weather. We think of all of you often and thank you for your continued support and encouragement.
Love and Blessings,
Rachel/Mama
Friday, April 21, 2006 12:35 AM CDT
Well, I've been waiting and waiting for Maryah to update her journal but she has been resting up from vacation and tutoring and even making dinner. She prepared Chicken Parmasean for our dinner last night and I have to say it was really quite delicious. She must take after her mother....hahaha! Sorry Zach just had to get that jab in! The trip to Boston was AMAZING! When we arrived on Sunday we spent the day traveling the coast from Cape Cod to Rockport and then into Boston where we met up with Cari and Aaron and cousin Nick. Cari had baskets arranged for the girls with an itinerary including color and pictures of the days events. The baskets also included all they would need for their adventures like maps of Boston, duck quackers for the Duck tour, Boston Red Sox T-shirts, marathon T-Shirts as well as cheering gear (cow bells, pom-poms).
Monday started with the Red Sox game (THEY WON!) and then off to the front of our hotel to cheer on the sea of runners streaming by our front door. We cheered for three hours until we finally saw our Cari running her heart out with a HUGE smile. There was a quick stop for a big hug and then she was on her way to the finish line! At 5:26p.m. I received my text alert that Cari had crossed the finish line completing the great Boston Marathon! The impact that this whole experience had on me was truly remarkable. I knew it would be great but it was more than great it was one of the most AWESOME moments of my life. I believe that Maryah will remember this forever.
We went on to celebrate with Cari, Liz and the rest of the gang at our hotel over pizza and cheers. It was so awesome to meet Liz and spend time celebrating it was such a monumental experience for all of us. There was so much energy and life in that room, again it was AWESOME.
Tuesday brought a trip to Harvard Square in honor of Morgan's aspirations of attending Haaavahd for college. We went on to the Boston Duck tour learning much of the great history of a great city. After learning all we could on the tour we hopped in the car and made a short drive to good ol' Shrewsbury to visit Aunt Audrey and David at the Allen Homestead (this has been part of the Allen family line since 1726) where Morgan and Maryah stepped foot on the land that reflects their ancestors and the lives that they lived before her. We visited with Aunt Lil (Gram Allen's fiesty sister)amongst other family that made the trek to spend some time visiting.
Upon returning to Boston we visited Fanuil Hall walking through the shops and ended our day at the Wharf for a seafood dinner at Legal Seafood.
On our last morning we spent a lovely couple of hours over breakfast at Zaftigs where Cari works part time. The breakfast was delicious and the time spent before departing back to our dear Minnesota was a simple blessing.
Cari made this trip one we will never forget. From running the oldest marathon in the world to raise money for Cancer research to planning events that were "everything Boston" Cari was a superstar.
Although we are currently experiencing a little post-Boston depression ourselves we have been enjoying our pictures and talking about all of the fun that we had.
Morgan is now a true die-hard Red Sox fan and even more excited to go to Harvard then ever. Maryah is motivated and energized to finish the last few miles of her own marathon.
I have an overwhelming sense of peace in my heart and I am overjoyed by all that we have experienced this past week. I know that I will never forget. Thank you Cari! We love you and are honored by your thoughtfulness and generosity.
Cheers (as they say in Boston),
Rachel/Mama
Monday, April 17, 2006 5:02 PM CDT
VERY EXCITING NEWS!!!!!!!!!!
Maryah,Morgan,Rachel,Zach,Minnesota friend/colleague of Rachel's Natalie and cousin Nick Allen all watched Cariann as she neared the finish of the Boston Marathon. Sitting infront of Hotel Commonwealth on the marathon route and a very short distance from the finish, Cariann stopped ever so briefly to hug Maryah and to get a few precious photo snaps which no doubt we will get to view after their return (Wednesday). Please drop into Cariann's website at the bottom of this page and see what she had to say about our Miss M...it is ever so sweet and heartfelt. What a trooper Cariann has been to train and train and train and run this great marathon. I know it means the world to Maryah and family that she has put out this extraordinary effort for cancer research and to encourage all of us to complete our own marathon. Maryah's had a tougher recovery phase from her last chemo round but she would not ( I repeat WOULD NOT) have missed this event for the world. Maryah will begin her last chemo round next MOnday. IT was suppose to start today but the Docs at Children's felt this was too important to miss. We pray "All Will Be Well" with the last round and that this will mark the beginning of her recovery phase. Thanks for checking in. I'm sure there will be new entries toward the end of the week from the returning gang. Thanks, Elaine/Mom/Nuna
PS>I almost forgot Maryah,Mo,Zach and Nich went to Fenway today to watch the Red Sox win their game...I'm sure this added to their excitement.
Saturday, April 15, 2006 6:24 PM CDT
Well in about 12 hours we will be aboard our flight to Boston. We are finishing up the last minute packing and getting very excited to get going. By tomorrow at this time we'll have checked into our Hotel. The Hotel Commonwealth is on mile 25 of the marathon and overlooks the Green Monster at Fenway Park. We will be enjoying all things Boston and the girls have their Red Sox hats packed and ready for the game on Monday.
Megan, Maryah and I spent a relaxing day being pampered at the Spa today. We got our nails done and massages. We are all rested up and lookin' good! Hahaha!
This will be the first actual time I have taken off work for a vacation rather than a hospital stay or clinic visit in well over a year. It will be so very nice. Morgan is not too bummed at all that the Easter Bunny won't be coming to our house because she understands that he may just leave something on the plane for her and Maryah.
Well, we're off! Wishing you all a blessed Easter.
Love and Blessings,
Rachel/Mama
Thursday, April 13, 2006 3:03 PM CDT
Hi everyone!
Finally getting another update out. Maryah has been recovering nicely this week. After a pretty tough/sore weekend with really low counts things seem to be coming along nicely as we get closer to the weekend.
We made a trip to the clinic yesterday and counts are recovering all except platelets so Miss M received another platelet transfusion or "oil change" as she refers to it.
She should be all ready to go now. Nothing left to do but pack, fly and have fun!!!
Maryah is really looking very forward to her big trip and meeting Cari at the finish line. This is a milestone of sorts for her as well. I'm honored to be a part of it.
Wishing everyone a very blessed Easter!
Thank you for checking in and I promise as soon as we return I will start downloading pics from the trip.
Love and Blessings,
Rachel/Mama
Sunday, April 9, 2006 10:17 AM CDT
Well it took me a bit to get an update on here but we are FINALLY home!
Maryah would be updating herself but she is still sleeping peacefully this morning at 10:20 a.m. and I will let her sleep as LONG as she would like. She had a busy day after getting released from the hospital. In her usual spirit she wanted to get out and do something after being cooped up at the hotel. Dad took Maryah to a play they'd been planning on and then the girls and I went out to Grandma and Grandpa Frascone's house. The girls had wanted to help make "Pizza Gene" or Papa Gene's Easter bread and they made it for atleast the last couple batches. Mo helped roll some dough and Maryah rested her leg.
All that activity right away has taken it's toll on Miss M and I think today will be very low key with a movie and some R&R so she has lots of energy for the week to prepare for our trip to Boston!
Thanks for all your concentrated prayers. We have made it through another round with just one remaining. Take care and I'm sure Maryah will be on here before you know it in her own words!
Love and Blessings,
Rachel/Mama
Friday, April 7, 2006 1:31 PM CDT
Good Afternoon!
We are still here at the hotel and it looks like this darn fever doesn't want to shake it's hold today. She was lingering a little lower and then she spiked again around noon. That brings the docs to the decision to keep her here another night or until the fever comes down. All blood cultures are negative however so that is good news. Maryah has had a lot of pain in her knee as her plateletts are pretty low.
We'll get her out of here as soon as possible. Hope everyone has a great weekend!
Love and Blessings,
Rachel/Mama
Wednesday, April 5, 2006 6:48 PM CDT
Hello everyone!
Maryah is checking into the hotel this evening. After lingering over a low grade temp these past couple of days she finally spiked to the magic 101.5 that earns her a ticket to the hotel. She will stay in for some IV antibiotics and blood cultures. We will pray that this is quickly and easily resolved so she can get right back home. Dad is staying with Ry for the night while Mo and I hang back.
Maryah is not very happy to be at the hotel but she knows it is important that she go and get the antibiotics since her counts are WAY down.
We are still looking very forward to our trip to Boston and have been talking lots about our plans for the trip. It will be so much fun!
We will update tomorrow once we know the plan. Hope you are all having a good evening.
Love and Blessings,
Rachel/Mama
Sunday, April 2, 2006 1:57 PM CDT
Hey!
It's Maryah!! How's is everyone's day going?? Mine is going great!! This morning we woke up and for breakfast my mom maid us all pancakes. They were sooooooo nummy. Right now we are out at my aunty Jo's house we are going to stay out here for dinner and hang out for a little bit but then we are going to have to head home because tonight homecare is coming to draw some count's. Tomorrow I am going to go to the clinic to get a blood transfusion. My hemoglobin is really low so I got to go and get an oil change. Well, I am going to go and hang out with my family but I will write again real soon. All my love. God Bless.
Maryah
Friday, March 31, 2006 4:15 PM CST
Hey Everyone!!
It's Maryah. How is everyone's day going?? Today I finished my second to last round of chemo. Now only one more left to go before I am done! I can't wait! After chemo today we went to go and surprise Morgan by picking here up at the bus stop and going to lunch and a movie. We went to see Ice Age 2. It's really funny!! We all had a great time today. It's always nice to go on a girls lunch date together. Well, sorry to make it short but I am pretty tired and need to go and rest before my dad gets here. I will write again this weekend. All my love! God Bless!
Maryah
Wednesday, March 29, 2006 3:10 PM CST
Hello everyone!
Today I had chemo and have just two more days left for this round. YAYYYY!!! After this I only have one round left!! I can't wait until I am done. One normal life comin' up!
Tonight we have dance class for Mo and I will get to hold and watch baby Lyndsey while Megan and Aleisha teach the kids.
Only two more weeks until we leave for Boston!!! I'm so excited to go, it will be a lot of fun to see our family and friends. We are going to drive to Cape Cod on Easter morning when we get there for brunch so I get to see the ocean again! The first time I went to Cape Cod with my Mom and Dad I ran across the sand and sat down in the waves with all my clothes on it was pretty funny but I don't really remember because I was only 18 months old from what my Mom and Dad tell me. We have lots of pictures from that day so maybe some day I can post them on the site after all it was my first trip to the ocean and Mom's too!
Please keep praying for all my friends especially Eli because he and his family have had a pretty tough week. They are finnaly going home from the hotel today!
Well I think I'll go rest for a little bit before we have to take Mo to dance.
Thank you for checking in on me today. I am so lucky to have so many good friends.
All my love. God Bless.
Maryah
Saturday, March 25, 2006 12:08 AM CST
Hey everyone!
Just thought I would update quick. Today I am spending the morning with my favorite person in the hole intir world, my Grandmere!!! Today we came to her apartment for the best pancake breakfast ever. When we showed up the whole family was there. It was like a mini reunion. We had such a blast! This evening we, as in my Dad, Mo and I are taking Mo to the play Annie. We are all really excited especially Morgan. I am really looking forward to Monday because Monday is the second to last round of chemo. It's going to be awesome when I am done! Well, I am going to go spend some more time with Grandmere. All my love. God Bless!
Maryah
Saturday, March 18, 2006 8:53 AM CST
Hello everyone!!
Maryah here. Happy Saturday!!! I am feeling much better than I was on Thursday and Friday. Like my Mom said my counts were in the toilet just like we were expecting them to be. But anyway, today I am feeling much better. Yesterday I had a great morning! My Grandma and I went to go and see the play Prom at the Children's Theater. We had so much fun! It really wasn't at all what I thought it would be like but it was still lot of fun. After that we went to go and pick Morgan up and she spent the rest of the day with Nuna and I. Well I hope everyone has a great Saturday!!! All my love!
Maryah
Wednesday, March 15, 2006 8:47 PM CST
Maryah's counts are most definately in the toilet as she expected they would be. She made a trip to the Hem/Onc clinic today for red blood cell and platelett transfusions. They also started her on some iv antibiotics to try and kick whatever is causing her fevers and possibly help knock out this cold.
Unfortunately both Maryah and Morgan are sick with this garbage so it makes for a very cranky household. Poor girls!
Maryah is working hard and I am proud of her, Morgan is doing her best to put her foot down and be heard daily and I am proud of her too! The strength of these girls keeps me going through each day. When all seems bad and overwhelming I just think of them and all they have ahead and I smile knowing that we will always ride the waves together!
We are hoping for a quick blood count recovery and then just one more round before Boston and one more round after that! As Cari reaches the end of the marathon she has worked so hard for we will be running the last mile of this particular marathon as well. It will be quite a celebration for all of us!
We still ask that you keep all of our friends in your thoughts and prayers also: Eli, Jordynn, Liz and the many others throughout the way. These are an amazing group of kidlets and we sure do think the world of them and their amazing stamina!
Enjoy the snow for those of you who love it and Spring is just around the corner for those of us who don't love it!!!
We'll keep you posted as the week improves. Maryah is doing a great job of keeping you updated so I think I will pass on the baton for a bit and have her keep talking...
Love and Blessings,
Rachel/Mama
Tuesday, March 14, 2006 10:28 AM CST
Hello everyone!!
I so broke my promise to write yesterday! I am really sorry! You have to give me a little slack though yesterday I really wasn't feeling too good. Today is just one of those eat hot soup drink hot tea kinda days. I have a really bothersome cold and a lot of mouth and throat sores so the last couple of day's I have just been resting and trying to get rid of my cold. Hopefully it will magically get better in the next day or so before my count's start to go in the toilet. Homecare is going to come out in a little bit to do count's to see if they are already in the toilet or if there not. Hopefully they are still somewhat up there so I can try and fight off this cold. I doubt that I am really going to fight off a cold right now but it's always ok to try. Well I am going to go and rest but I will right again very soon. All my love, God Bless!
Maryah
PS. Thank to for all the messages! Every time I read one I smile a smile that show’s that I am truly thankful for all of you!!
Thursday, March 9, 2006 3:09 PM CST
Hello,
It's Maryah. I was staring at the computer and so I thought I would do a quick journal entry. I promise I will start writing on the page more often. I have been slacking on my job big time! I am having a pretty good week this week. Actually I am having a great week this week! Chemo is going good and my legs feeling strong. I think I am doing pretty darn well for a chemo week! The chemo doesn’t really seem to affect my stomach anymore. At least not as much as it used to at the beginning. Ever since I have had my Port put in and my Hickman taken out life has been so much easier for me. My tutoring! I can not believe have not updated on my tutoring. I am having so much fun!! I have been doing math, reading, games every fun thing that you can possibly do to learn. I haven't been in school for so long so I get so excited to learn all these new things! It's so funny because I have actually only really had two sessions with the tutor and have already learned so much! For example new math tricks, easier ways to do book reports, how to read just a little bit faster and still understand what's going on in the book. There is tons of fun stuff to learn and so much more to go! Well I am going to head out but will write agian let's say on Monday if not before, and that's a promise!
God bless!
Maryah
Sunday, March 5, 2006 11:21 AM CST
Happy Sunday!
The Tift girls have had a busy weekend. We spent the whole day in Monticello yesterday. We went up to see cousin Kaitlyn's basketball tourney and ended up spending the entire day. Her first game was at 10:20a.m. (which they won by the way) then the next game wasn't scheduled until 6:30p.m. so we had some time for lunch, shopping at the Albertville outlet and then some swimming at their hotel in Albertville after the game. We didn't arrive home again until around 10:30p.m. It was well worth it though since Maryah was having a superb day with good counts, low pain and lots of energy. It was such fun and we all really had a lot of fun! Kaitlyn's team, the Little Falls Flyers won the second game also. We are awaiting the results of today's games. GO FLYERS!!!! It was fun to cheer them on and of course to watch my big brother, "the spaz" coaching. It's always good to see them.
Today the girls slept until just after 10:00 a.m. (maybe a first ever) and we are keeping things a little more low key since we had such a big day yesterday. We will likely just hang around the house and catch up on some R&R. Although we are debating going to see Eight Below. We'll see how we are doing here in a bit.
Tomorrow begins round #8 of 10 for chemo. We will keep you updated as we go through the week.
Well, hoping everyone is having a very good weekend and enjoying their time as much as we are.
Love and Blessings,
Rachel/Mama
_______________________________________
Update to the day: We went to Monticello again since Kaitlyn's b-ball team made it to the championship game and watched the Little Falls Flyers WIN the State Championship game!!!! Way to go Kaitlyn and team. We had a ball. We're home now for a nice meal and R&R...way better than going to a movie.
Wednesday, March 1, 2006 2:05 PM CST
Dear family and friends,
How is everyone's day going? Today I am spending the day with my Nuna at her house. We are having a great day!We had our own Ash Wednesday service and said some special prayers. I am learning the Serenity PRayer and can recite most of it now. For lunch we had some of Nuna's friends from the U of M Raptor Center over for lunch.We ate chicken drumstix,salad and french bread. It was delicious! We all had a really really good time. I think after all that party-in' I am ready for a big nap. Well, I will write again soon. All my love. God Bless you all. Maryah
I'll add a note here,too. As Maryah mentioned we are hanging out at my house...and since our renovation is finished, it is a lovely place to hang out in. This is a great week for Miss M as it is the second week past chemo,her counts are reasonable and she's about 90% pain free/nausea free which leaves a whole lot of room to be cheerful,smiley, innovative,motivated, inspired and inspirational. She and Mo have played UNO quite a bit and she's learned some cards tricks from Uncle Nate,chatted with friends and family ,had visits from support people, had deep thoughts and silly moments, done some school reading, talked about fashions and listened to all kinds of music including some of Uncle Andrew's rock and roll!
Chemo next week...next week will take care of itself. We are all bouyed up to think this chemo stuff could be coming to a close in the next few months and then we are all on to RECOVERY and all that that entails. SInce I saw my first Robin yesterday, I know that another SPRING is on its way...can't wait to watch our girl blossom.
Now for a few shameless lines of advertising for the MONDAY JULY 24th event for Rein in Sarcoma...we are organizing it right now so should you have a great SIlent Auction item/idea to share, or Company Sponsorship to offer or know a printer who could offer some assistance or or or ....give us a jingle or check out the link at the bottom of the homepage and find out what RIS is about..Thanks for tuning in,Elaine/Nuna/RIS Board Member
Friday, February 24, 2006 6:49 PM CST
We're home!!!! In and out in one night!!! No problem...this is a breeze right???!!! I wish...
Maryah's temp did come down during the night and blood counts are quickly starting to come up now. They would have kept her but blood cultures showed nothing to be concerned about.
This is the standard pattern that Maryah goes through every three weeks. When counts come down she feels lousy. She's nauseated, her pain increases, she gets headaches and gets short of breath. Every little thing that might come along any other day feels 100x worse when all this is going on. Fortunately we know that it is coming and that there is an end in sight the following weeks. We have realized the pattern now that we are nearing the end of treatment. Never too late!
The great news is that we were able to enjoy our traditional pizza/movie night at home rather than in the hotel.
As for hotel stays...we'll be looking forward to our trip to Boston for the stay in the HOTEL Commenwealth NOT the hotel 4200. Keep runnin' Cari..we're on our way!
Thanks for checking in. We'll keep you updated if there are any changes. Have a great weekend!!!
Love and Blessings,
Rachel/Mama
P.S. We are hoping the SUN will bring the sun and warmth to MN sooner rather than later.
Thursday, February 23, 2006 10:01 PM CST
Good Evening,
Just a quick note from the "hotel 4200". Unfortunately Maryah has landed here at least for the night due to a high fever that came about and really low counts along with it. Came into the ER at supper time and got up to the floor here at around 7:45. Maryah is getting two units of packed red blood cells since her hemoglobin is only 6. She got a dose of antibiotic and will likely get another dose sometime during the night and we'll see where to go from here tomorrow. Her fever has already come down considerably so we are hoping this is a very short term stay. Maryah was pretty bummed to come here since she has managed to stay out of the hotel for a long while. We were welcomed to the hotel by our good friend Eli who is here for chemo and Laney who is here for her LAST round of chemo. Lots of friendly faces at least.
So now Maryah and I would like to share a message sent by our cousin Cari regarding her exciting Marathon news (incase you are new to the site she is running the Boston Marathon in Maryah and her friend Liz's honor to raise funds for Dana Farber Cancer Center in Boston). So here it is:
Hello Family!
I have reached an exciting milestone, today I came within $500 of my fundraising goal of $10,000! I truly never dreamed that I had the personal capacity to raise this kind of money. Yet, through the amazing generosity of Liz's, Maryah's, and my friends and family this goal will become a reality.
Given this, I thought why not push the envelope a little more given that there are still over 7 weeks to go so I raised my goal to $10,500!
So if you think there is anyone you know who has a dedication to the efforts of Dana Farber and is willing to support one crazy girl running 26.2 miles for 2 amazing girls fighting cancer then please send them to my Dana Farber Marathon Team Website at http://tinyurl.com/7ptgm.
I THANK EACH OF YOU FOR HELPING TO MAKE THIS HAPPEN!!!!
Love,
Cari
Take a look at Cari's website. The link is below! Way to go Cari!!! We're proud of you.
Also want to wish CONGRATULATIONS to Aleisha (Maryah's dance teacher and close family friend) on the birth of her baby girl Lindsey Kate born Monday...she's precious!
So with lots going on I hope that everyone out there is doing FANTASTIC! Thanks for coming to visit and continuing to offer your support. We love you all and our gratitude is beyond words.
Love and Blessings,
Rachel/Mama
Saturday, February 18, 2006 10:24 AM CST
Good Morning!
I hope everyone is staying warm in this deep freeze that we have going on here in the North Pole...oh wait...it's Minnesota...sorry! I forgot!!! Time to move to that little villa in Italy I've been dreaming of!
Well, Maryah has finished round 7 of her chemotherapy like the champ that she is. Even with a bout of stomach flu on Thursday to add to the already crappy nausea she made it through and is doing well today. There is still the typical nausea and feeling a little less energy but over all she's good.
We are preparing for a visit out to Auntie Jo and Uncle James' house. The car has been warming for almost 1/2 hour so we should be about ready now. It will be nice to get out of the house a bit today and change things up after a long week.
We'll keep you updated throughout next week as counts come down to let you know how things are going.
Please keep our friend Jordynn in your prayers as she is "hotel" bound and in isolation for a very contagious infection as well as she was just diagnosed with diabetes yesterday. This is a lot for she and her family to face after her struggles with Luekemia and I just ask all of you out there to pray for Jordynn to bring she and her Mom, Dad and Sister (Penny,Rick and Taelynn) strength for the road ahead.
Thanks for checking in. As we always do we feel so very blessed by your presence and support.
Love and Blessings,
Rachel/Mama
Tuesday, February 14, 2006 2:29 PM CST
HAPPY VALENTINE'S DAY!!!
Wishing you all a very blessed day full of love and happiness. We are certainly very blessed by all the love and care you show for our family each and every day!
Thank you for your constant support it is the very thing that gets us through each and every day.
Maryah began her 7th round of chemo yesterday. With just three rounds left after this we are hopeful and looking forward to the TKO. Our little champ is working hard to fight the beast and she is winning!! We will be going to Boston right before the final round of chemo to get all pumped up for the final round with Cousin Cari. What better way to celebrate and get prepared.
Maryah is working with a tutor starting next week and is still working diligently to work on school work. There is lots to do and we are keeping our days busy.
Well, again have a wonderful day and enjoy eachother. We send our love to all of you!
Love and Blessings,
Rachel/Mama, Zach/Dad, Maryah and Mo
Sunday, February 12, 2006 11:17 AM CST
Hello everyone!
Maryah here. How are you all doing?? I am so sorry I haven't written in such a lomg time. Once again I am just not feeling well. My leg has been hurting and so has my tummy. I have another full week of chemo starting tomorrow. I am honestly not looking forward to tomorrow or the rest of next week. Well, I don't mean to make this short but we are just leaving for mass. Thanks everybody for checking in! Have a great day and I will write soon. All my love and prayers. God Bless!
Maryah
Tuesday, February 7, 2006 3:33 PM CST
Transfusion day! It was a long day at the clinic today. Maryah was due for a transfusion today after counts came back so low on Sunday. However we took counts this morning and they were a bit higher. This is good news since it means her body is recouping all on it's own quickly. Although we did decide to do a red blood cell transfusion today in order to boost energy and help with shortness of breath.
Maryah slept through most of the day which was just fine since I had lots to do to keep busy all on my own! We should be on the upswing now just about in time to get started on time with the next round of chemo.
Hopefully there will be some days of feeling good, school work and fun!!!
Love and Blessings,
Rachel/Mama
Sunday, February 5, 2006 5:46 PM CST
It's been a quiet weekend here at home. Maryah had some pretty bad pain starting on Thursday and into Friday. We were able to get it under control and she's had a better weekend since. We haven't gone out to do much but we've had some quiet movie time. Although I do have to say I am so THOROUGHLY sick of the television and movies I could puke!!! We've watched every movie there is (twice). We played some games and read a bit too!
Counts were pretty low at the end of the week, in fact they were pretty much nothin'! We drew labs again today to find out where we're at today. We're pre-planning for some transfusions either tomorrow or Tuesday. Likely she will need red blood cells and platelets. We'll see! She has surprised us before.
Hoping you are enjoying the weekend and have fun watching the Super Bowl!
Love and Blessings,
Rachel/Mama
Thursday, February 2, 2006 6:45 PM CST
Hey Everyone!!
Maryah here! I am so sorry I have not written in so long. I have not been feeling well lately. My counts are starting to drop so my leg pain and nausea are really really bad. Anyway, I will start writing more, I promise. Well, we have our trip to Boston all planned out for the Boston marothon that my cousin Cari is running. I am sooooooooo excited. We are all going to have a fabulous time. I looked online with my mama at our hotel and it was absolutly beautiful. Thanks for checking in. All my love. God bless...
Maryah
Tuesday, January 31, 2006 8:12 AM CST
Goodmorning!
We are starting a new week and the drop in blood counts. Maryah is feeling okay but a bit pukey! We are praying for a quick recovery this time around.
The GREAT news is that Maryah is off of her IV pain meds for the first time in THREE months!! They finally have her switched over to some oral meds that should help control the leg pain she continues to have. The first thing she showed me when I came home from work was that there was NO NEEDLE!!! This was a very happy day and it will be much easier getting around without pumps to drag and listen to all night!
Maryah surprised her sister on Saturday with tickets to the Ice Skating show at the Xcel center. Maryah with help from Megan got tickets in the McGough suite and Mo LOVED it!!! It was a nice treat for them.
We have planned and booked our trip out to Boston for the big Marathon that Cari will be running. We will be waiting for her at the finish line as promised. We will leave on Easter Sunday as the marathon will be on Easter Monday. So our non-traditional Easter will consist of a day trip to the Cape for some sight seeing before the big day.
Since we have talked to Morgan about attending Harvard since before she could talk when I told her we were going to Boston she welled up with tears and exclaimed "I'm not even in High School yet!" After much reassurance that we were not expecting her to attend Harvard quite yet she thought it would be nice to visit the Harvard campus and wear her Harvard shirt as well. The mind of a five year old!
We expect that Maryah should be close to done with her chemo by the time we make this trip so there is much to celebrate.
So as Cari says...CHEERS!
Love and Blessings,
Rachel/Mama
Thursday, January 26, 2006 11:29 AM CST
Good Morning!
After getting the whole group of us screaming at different times and places around the globe I have to say I appreciate the immense support and love that came after my ranting journal entry! Thank you for helping Maryah and me to bare the wieght of a difficult day and point in this journey.
Today we are back in the ring and about to win round #6. Maryah had an extremely tough day yesterday but she is MUCH better today and in day 4 of chemo along with her ringman and biggest fan (Daddy). She is feeling much needed relief (as am I).
As I talked to Elaine (Nuna) we discussed that although I am typically upbeat and positive on the site,every day is not always great and fine. We each play a role in Maryah's journey (Zach, Nuna and I as the primary care givers). Each of these roles has it's difficulties and so even though it may have been a good day for one of us it hasn't always been a good day for the others in this group! We are beginning to recruit help along the way so we can each regroup and refresh and try to relieve one another as much as possible.
We are faithful and we are fighters all of us and we will all press on through good days and bad. It is the support and prayer that we receive along the way that makes it a bit easier.
Thank you for your continued support and love and for all of the loud screams...I think God heard us all!!! I praise Him for the good days!
We'll keep you updated as the weekend goes along.
Love and Blessings,
Rachel/Mama
_______________________________________
Check out this AWESOME site that Megan just sent me...SO COOL!!!
http://www.thesurvivormovie.com/
Tuesday, January 24, 2006 5:16 PM CST
Today has been a rough day! It was a VERY long day at the clinic after two units of red blood cells to get Hemoglobin up and then chemo which is hard on the tummy right now. Maryah and I came home and decided it would be a good idea to scream our heads off! So that's exactly what we did!!! We screamed at the pumps to "SHUT UP", we screamed at the cancer to "STOP TRYING TO BEAT MARYAH UP!", we screamed until our voices were hoarse! It felt good although I am certain our neighboors will think we are insane over here. There are days like this amongst the strong days where everything seems to "malfunction" and we just have to get it out of our systems to keep ourselves going.
Chemo sucks, DAMN cancer and DAMN all it's side effects!!!! I pray for one moment Maryah could feel like a cancer free 11 year old girl again. This is the worst feeling in the world and for someone who is normally so in control I certainly feel out of control not being able to take all this crap away!
So although I normally don't rant and rave on this site today was a day for ranting and raving...hoping you'll bare with me.
Please pray for her...i'm just fresh out at the moment and Maryah needs the prayers. This too will pass however today I am ANGRY at all of this!!!! DAMMIT!!!!!
All the while Maryah is talking to the Hem/Onc staff about doing a research paper for school on blood products and blood cells...she wants so much just to do what everyone else is doing and I want that for her more than I've ever wanted anything in the world.
Can't see through the tears anymore and need to stop writing now. I'm sorry to air this all out on here but everyday is not a GOOD day and I'm tired and I'm worn down heart and soul and I am certain that everone I know whose child deals with this demon shares these type of days. This does not mean Maryah won't get through, it does not mean we have lost hope. Somedays are just tougher to get through then others!
Love and Blessings,
Rachel/Mama
Monday, January 23, 2006 12:48 AM CST
Good Afternoon!
Maryah is at clinic this afternoon for yet the start of another round of chemo. This makes round #6. Maryah is ready and on top of her game to start this round, talking just a few moments ago about getting home to work on her homework. She is very excited to begin her venture toward the 7th grade.
I have to believe somewhere along the line she has earned some "extra credit" learning all that she has learned that should apply to her educational requirements!
We will do another set of scans after this round to verify no more tumors have developed. Maryah also continues to have significant headaches (which could be caused by a variety of things) and we anticipate doing another head CT this week to rule out further tumor development. Keep praying!!!
It has been such a long and winding road we have traveled over the past two years and I feel weary at times but it is in those times that I remember Maryah's internal strength to perservere and jump back to it. I explained to Maryah that on top of all that she has shown/taught me I am most impressed with her integrity. She asked what integrity is and I explained that it means always doing the right thing no matter who is watching. She has recently made me think hard about the value of individual integrity and how I can live in integrity as well as she does. I am blown away daily by the life lessons that Maryah brings me back to through her own challenges. She continues to be a great source of pride for Zachary and me.
God has blessed our family with this opportunity and I am forever humbled by His grace. Thank you for riding along!
Love and Blessings,
Rachel/Mama
Tuesday, January 17, 2006 2:06 PM CST
Good Afternoon!
We are at Children's today for some appointments and while Maryah is busy doing her thing I am stealing a few quiet moments in the family resource center.
Maryah's counts are improving and she is doing well. I was so proud of her yesterday I have to share her accomplishments here. When I got home from work Maryah excitedly reported to me that she had contacted her school counselor (on her own) and requested daily tutoring and text books on audio so she could get caught up and ready for the 7th grade. She talked to her again last night to follow up with the plans. She has really taken the initiative to make this happen for herself and I just couldn't be more proud. When we talk about standing up to fight these are the battles that we face daily. Maryah recognized this battle and stood up to the challenge it facing it square in the eyes she has a plan to conquer! Just when I thought maybe she had lost her will to fight she comes back around swinging and never fails to surprise me and keep me on my toes. She gives us all the will to fight! Thank the Lord for her strength of spirit and faith to keep her energized. It was a proud moment, one amongst many that I have that I wanted to share.
I will keep you updated. We are hoping and planning for the next week+ to be good and productive. Maybe I can get the girl to get on here herself and type her updates. So much to do so little time!
We love you all and thank you for your continued encouragement and support. It also gives us the will to press on!
Love and Blessings,
Rachel/Mama
P.S. Please pray for our friend Liz Kaiser. After a fall at home she has fallen and has broken leg bones. She is recovering from Osteosarcoma and has been through quite a bit. Let's keep her strong through our prayers. Thank you!
Wednesday, January 11, 2006 9:10 PM CST
Good Evening!
Sorry for the delay in the updates. Things are a bit hectic as usual. Maryah's blood counts have dropped pretty rapidly this time and she is feeling okay but a bit yucky with the standard upset tummy, no appetite and a bit more pain in her knee/leg. She is still a champ however!!! Today we ended up at clinic for a blood transfusion and skipped out on pool therapy since the stomach was upset. Didn't want to push it. However there is always room for a trip to Target for a brief shopping excursion. Nuna obliged Maryah's request to shop and she had some fun outside of the house today. Thanks Nuna.
We are praying for counts to recoup quickly so Miss M is feeling better soon and can be up and around.
Tomorrow brings a special birthday in our family as Grandma Marcella Emerson turns the big 90!!! Wishing Great Gramma Cella a wonderful birthday.
We are also praying hard for Anni and her family as they did determine the spot from her PET scan to be Ewing's. Her Mom, Joelynn sent me an e-mail today with their plan of action and they are in the ring again this time to finally win this fight by TKO!!! Go Anni! We are cheering all the way from Minnesota. Please keep Anni and her family in your prayers too.
Hoping that you all are having a good week. We will keep you updated as we seem to have a lingering fever which we hope will vanish before a trip to the hotel might be necessary.
Love and Blessings,
Rachel/Mama
Friday, January 6, 2006 3:40 PM CST
Hey!
Maryah here. My dad just did a beautiful journal entry yesterday so if you didn't see it go back and check it out. We just finished chemo a little bit ago so my tummy is a little upset but I'll live. hahaha. We are going to my grandma caroline's house for dinner and my mom's work is like five min away so we are just hanging out here for a little bit and then going over to grandma's house for a wonderful spagetti dinner. tomorrow we are going to short stay for chemo and then we are going to go to my aunty Jo's house for the day. We aren't going to do much but watch movies but it's alway's fun to go out to her house. When ever I want to go away from home and go some where on a mini vacation that's where I go. Well I am going to go but I will try and write agian soon. All my love. God bless.
Maryah
Thursday, January 5, 2006 2:48 PM CST
Today is the two year anniversary of Maryah's original diagnosis. Technically the diagnosis anniversary is Wednesday, but all of this started two years ago today with a visit to the doctor because her leg was hurting her so bad. She had been having leg pain for about a month prior to the visit but it came and went so we attributed the pain to growing. That is where it hurt for me when I went through my growth spurt so we assumed the same since she is tall. From that visit at Central Pediatric's two years ago we went to St. Paul radiology for an MRI. Tuesday she had her biopsy. Wednesday she had a bone scan, CT scan, and an chest x-ray...and that was the day test results confirmed what Dr. Roby Thompson already told us; that it was Ewing's sarcoma. Thursday we had off from all testing and by this time Maryah knew about chemo and that her hair would be falling out so her mom and I said she could whatever she wanted to her hair. So she wanted dark red streaks put in and Dre did it. It looked awesome! Friday she had her port put in and a bone marrow aspiration. Saturday Dr. Salami called to say it had NOT spread to her marrow. Sunday we thanked God for His love and grace. Our Champ has been fighting the good fight ever since. With countless doctors visits, 12 procedures, 16 rounds of chemo, numerous days and nights at the hospital, pain, pain, and more pain under her belt she is a proven and war torn veteran but her love for God and all of us has never waned. Her faith and spirits are amazing. It brings quiet tears to my eyes to watch her pray because you can see a direct line between her and God. Thank you to all of you who have support Maryah, Rachel, Morgan, and me through these this struggle. Remember to stay prayed-up. Special thanks to my mom Elaine (Nuna) who stays with Maryah everyday so Rachel and I can work. Her love and dedication is done with grace and humility. Maryah and Nuna have this in common.
With love to all of you...
Dad/Zach/Ringman
Monday, January 2, 2006 3:32 PM CST
Good Afternoon!!! HAPPY NEW YEAR TO ALL!!!!
We wanted to take a minute to wish each and everyone of you a lovely new year with much happiness and many blessings. I would like to take this time to once again thank all of you for your continued support and love through this safari. We hope you'll continue along as it certainly does make life easier and always happier to have your love and support and especially your prayers.
Today we awoke to Eggs Benedict (Maryah's favorite breakfast). I have recently realized I'm a pretty decent cook if I do say so myself :) After a late breakfast we were off to the movie theater with Nuna and Bryan to watch the Chronicles of Narnia. This was so cool since it is a story I loved reading when I was a little girl. We had a great time and Maryah and Morgan both enjoyed the movie (and of course the popcorn too)!
We are headed into another round of chemo tomorrow and will likely have a long day at clinic getting hydrated and prepared for the meds. These weeks are always a bit long but we are surrounded by good Docs and Nurses who take good care of Maryah.
We will keep you updated as the week goes on.
Much love to you all and our prayers are always with you as yours are with us. Happy 2006!!!
Love and Blessings,
Rachel/Mama
Friday, December 30, 2005 12:17 AM CST
Hey everyone!!!!
It's maryah here. Sorry I haven't written in a while. Haven't been feeling the best, isn’t that a shocker! I really want to wish everyone a late but wonderful Christmas! I hope you all had a wonderful time. I know that I did! On Christmas Eve I went to my Aunty Jo's house with all of my mom's side of the family. We had a blast, great food great gifts and best of all great family time. This was the first time in a couple of years that the whole family on my mom's side was able to make it, so it was a really special Christmas for us. On Christmas morning my sissy and I woke up at the crack of dawn to open our gifts. It was a fun but also very tiring Christmas morning. I would really enjoy making a list of everything I got for Christmas but it would take me about two hours and it would be about five pages long so I think the safe thing to do is not go through all of them but let you now they were all AWESOME and there was a TON of them. Well I am going to go but thanks for checking in and have a wonderful day. All my love and God Bless!
Maryah
Thursday, December 29, 2005 9:49 AM CST
Good Morning!
Gloomy day here and the promise of more snow. Not looking forward to that! Maryah has had a pretty good week. The transfusion helped a bit on Monday. We went into clinic before pool therapy yesterday. We got to see Kathy our Nurse and Dr. Slo Bananas for a bit and the good news is counts are coming up a bit now. Hopefully they will be where they need to be to start chemo again on Tuesday next week.
We are looking at trying to get some time out of the house and doing some fun things before the snow flies too much.
Wishing you each a FANTASTIC and blessed New Year. Be safe and have fun this weekend!
Love and Blessings,
Rachel/Mama
Tuesday, December 27, 2005 9:39 AM CST
Good Morning!
Maryah had a fabulous weekend! Thanks for all of your concentrated prayers. We did have a small trip into short stay yesterday afternoon into the night. Maryah has a very low hemoglobin and needed a blood transfusion. She should be perking up a bit after that. So far her fever has stayed away with the antibiotics and pain is still there but a little more manageable. We are hoping for a low key week with some pool therapy preparing for our next round of chemo which begins again next Monday...not much respite.
Hoping everyone had a fabulous weekend. Looking forward to the new year!!!
Love and Blessings,
Rachel/Mama
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Can I make another prayer request? Do I have you all prayed out yet? I hope not. Our friend Anni in Wisconsin needs your concentrated prayers right now. She has battled Ewing's twice now. First in her pelvis and then in her skull like Maryah. She went through High Dose Therapy and is just over a year out. She had a PET scan last week and they did find a spot in her upper arm in the bone marrow. We need to pray that this is not another recurrence. Her Mother has been a huge help to me and I am praying that their family is done battling this beast and has won the battle for good! Her site gets updated once in awhile. I heard this news through an e-mail from her Mom but if you'd like to visit it's www.caringbridge.org/wi/anni. Thanks again!
Saturday, December 24, 2005 11:33 PM CST
It's the eve of the Lord's birth...this night is and always has been magical for me. The night always seems so peaceful and calm. The girls are fast asleep as they wait for Santa to come visit!!! Cookies, milk and carrots are waiting on the table for the big guy to come along. We talked tonight of the celebration of Jesus' birthday and Morgan decided she would give her gifts to Jesus. I thought that was a good way to encompass the Christ like giving that I try and teach the girls to remember this time of year.
Today was FABULOUS! Surrounded by our amazing family, laughter, lights, good food and so much love. It was a day that I will forever be grateful for. Maryah's presence was the most incredible gift I could've received. Although she didn't feel great she certainly enjoyed herself and her time with her cousins. She is so special...she shared her past Christmas stories with Morgan on the way home in the car. They searched the skies for Santa's sleigh and she helped Morgan decide that they wouldn't be able to find him because he only comes when children are sleeping. She is so sweet and caring of her little sister. Their interactions always touch my heart and make me just a little more humbled to have such precious beings entrusted to my care. God has given me so many blessings but he trusted me enough to take little pieces of my heart and let them run around my house...hahaha! That's a lot of trust. So tonight I sit by the Christmas tree light and celebrate quietly all of my countless blessings and especially the opportunity to celebrate the birth of Jesus with my family again this year.
Merry Christmas to all and to all a good night!
Love and Blessings,
Rachel/Mama
Friday, December 23, 2005 8:35 PM CST
Good Evening!!!! GREAT news is....we're home for Christmas. Our Docs and Nurses worked to find a "home remedy" for Maryah's fever. Protocol states that when a child is Nuetropenic (extreme low blood counts) and has high fever they are to be admitted for antibiotics and observation until a noted increase in blood counts...after all that mumbo jumbo...they agreed that we could do an antibiotic at home and watch her carefully but be home and gathered with family for Christmas.
This was the best possible Christmas present I could've asked for! Thank you Lord for this Christmas blessing. We are so thrilled to be able to join our families this weekend to celebrate this special holiday.
Thank you for your concentrated prayers. It means the world to us. Wishing you a blessed Christmas with peace, joy,love and of course the grace of God.
Peace be with each of you.
Love and Blessings,
Rachel/Mama
Thursday, December 22, 2005 10:21 PM CST
Tonight was a good night! Maryah's friends from school all came to celebrate Christmas together for a couple of hours. They really enjoyed themselves and I enjoyed watching them. They all love and respect eachother so much and it's a mother's proudest moment when she can see her child interact with such a fine group of friends!
I am thankful for tonight...it was the best Christmas gift I could have hoped for. Thanks to everyone who came along and thanks to those that made time during the week to pop in and spend a bit with Ry. You have made her very happy!
Tonight I am requesting prayers....diligent prayers...specific prayers...Maryah spiked a temp of 102.8 today. We were able to have home care come out with a dose of antibiotic. We need her fever to come down so that she does not have to be admitted to the hotel over Christmas. So tonight I am asking "Lord please bless Maryah... please allow her to have the peace of gathering with family and being home for this blessed holiday...I ask you dear Lord please bring Maryah's fever down, limit her pain and help her body to fight whatever is causing this fever and eliminate it. Thank you for all of our many blessings and thank you for the special night we had.".
Thanks for allowing me to pray with you this time. I will hope for Maryah that she can be home...more later.
Love and Blessings,
Rachel/Mama
Sunday, December 18, 2005 7:27 PM CST
Hi again!
Just wanted to update again before the weekend is over. It's been so nice to be home and to have all of our friends and family wanting to come and visit. Maryah has had a bit of a rough go of it this weekend. She has been really quite nauseated and feeling pretty run down. Although it is hard for her to pass on offers to see everyone it is necessary until we get her through this rough spot. She usually feels pretty poorly after chemo so it is expected that she will feel this way for several days. God willing Maryah will have a good week and feel well enough to celebrate at upcoming family Christmas gatherings. Maryah attempted the Tift family gathering today and left after a short time and not feeling so hot. She is resting comfortably at Dad's tonight and will be taking it slow and quiet over the next several days. I did promise her that I would send out a GREAT BIG THANK YOU to all of you who have wanted to visit and spend time with her. It really brings a smile just to know you want to see her.
We are looking forward to the holidays and hope that you all are feeling the warm and joyful feelings that Christmas brings. We will praying for your families this year as much as you have been praying for ours. Thank you for all you do to support us. It truly means more than you could ever know! We will update you through the week. Maryah has some pool therapy this week and she truly enjoys that time. Here's praying that she will be feeling up to it and stay feeling well through Christmas!
Love and Blessings,
Rachel/Mama
Friday, December 16, 2005 2:59 PM CST
Good Afternoon!
We are finally home again! It is so lovely to be here. It took awhile to get settled in again but we are finally comfy and enjoying the Christmas tree. We love being together and Morgan especially is happy to have her big Sis home.
I think some of you may remember that our cousin Cariann from Boston is running the Boston Marathon in 18 weeks in honor of her friend with Breast Cancer and in honor of Maryah. The money she is attempting to raise is for Cancer Research for Dana Farber in Boston. Cari has a website for her fundraising mission that I would like to share with all of you. This way you can support if you'd like AND keep up with Cari's journey as she trains and gets prepared for this marathon.
Cari and Maryah have a special relationship that began on a dance floor in California at cousin Rob and Christine's wedding! Hope you'll pay a visit...the link is below!
We will be enjoying a very quiet and restful weekend as Maryah also finished a round of chemo this morning with her departure from the hospital. We are working on getting rest in preparation for Christmas weekend.
Here's hoping you are all feeling the joyfulness of the season and the love of your families and friends.
Wishing you all a blessed Christmas and New Year!!!
Love and Blessings,
Rachel/Mama
Thursday, December 15, 2005 4:42 PM CST
Good Evening!
Maryah is resting after a busy day in the pool and working on some handmade Christmas and birthday gifts. Looks like the good news of the week for us is that we get sprung tomorrow! They will do Maryah's chemo very early in the a.m. and then get us ready to head on out at around noon time. We are really looking forward to getting home and getting a break from the hotel. It will be nice to enjoy the Christmas tree and the decorated house for a bit before the big day!!! Of course we remind ourselves for the real reason for this season and remember that we have all this love, joy, peace, kindness and friendship around us all year round and it seems like Christmas always.
Poor little Morgan has come down with Strep Throat and will be taking a short respite at Nuna Elaine's tonight to get well and be on antibiotics for atleast 24 hours before she comes home to see her big Sissy tomorrow! Mo has so missed having Ry at home so she will be so glad to see her there when she returns tomorrow afternoon! Such a joy to have our family all together again.
Here's hoping you are enjoying peace, comfort, joy and love in your lives. We will keep you updated as we get home.
Love and Blessings,
Rachel/Mama
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Maryah got a chance to go out on pass tonight to attend the IHM-St.Luke's Christmas program at church. It was great. Maryah, Zach and I would like to tell all the kids that you did FANTASTIC at the program. You were all shining brightly and it was so fun to watch each of you show your individual talents!!! Nice job friends!!!
Lots of Love!
Wednesday, December 14, 2005 5:40 PM CST
Hello!
Maryah here. My favorite nurse ever, Julie finaly convinced me to get out of my room and go for a walk so I decided to come over here to the computer and doing a journal entry. Today has been a good day. This morning I had pool therapy and then I came back and got to meet the famous wild hockey player's. It was really awesome!! After that I took a really long nap and then came chemo after that. I have had a really busy day today but I have to admit it was the best day that I have had here yet. Thanks for checking in. God Bless. All my love.
Maryah
Tuesday, December 13, 2005 5:23 PM CST
Hello again! Maryah is resting comfortably, actually exhausted right now but for good reason. She had an amazing day today. Maryah started hydrotherapy in the pool here at Children's today. The pool is cool because the floor raises so they can wheel her in and then lower her into the water. Today...she walked on the treadmill pool floor!!!! She didnt' have to hold on to anything and then...she DANCED!!!! Most importantly she smiled from ear to ear. She did her dance stretches, leg high on the bar in the water...practiced walking heal to toe, worked to strengthen her muscles and knee and it was FABULOUS!!! It certainly brought up a ton of emotion and a few tears from me. It was so beautiful to see her walk after so long. It was even more beautiful to see how happy she felt to do things she so loves to do. My heart was touched deeply today and she worked so hard that she has exhausted herself. Before she went to sleep she ate a TON...Cosetta's Mostaciolli and then on top of that a PB&J. That is the most she has eaten in days! I will have to wake her soon for a meal and then for a brief visit to Papa Denny who is right around the corner from us at United where he had is Gall Bladder removed. It will be nice to have a visit out of the room.
We are still working on getting out of the hotel at the end of the week or weekend. We just need to make certain that all pain meds are working adequately for home.
I'll update again soon and hopefully with ongoing good news!!!
Thanks for checking in today. It was a GREAT day!!!
Love and Blessings,
Rachel/Mama
Monday, December 12, 2005 10:17 AM CST
Good Morning!
Just a quick update for all those wondering what's the latest news with Miss M. Maryah is still in the hotel and will be stationed there through Friday. She will begin chemo today and we will work this week to make sure that the pain meds are regulated and helping her with adequate pain control. We are taking our time to make sure this works as it should. It's been a long haul this time with Maryah being a bit incoherent at times due to the narcotics, lots of itching and vomiting. We are hoping this week to regulate and eliminate those factors. The docs and nurses are once again amazing and really trying their hardest to help us work through this. Maryah had a better day yesterday and was awake and alert most of the day, we played, went for a walk, took a bath and enjoyed another good meal (thanks to our friends from IHM-St.Lukes). It is long and difficult for all when we spend so much time at the hospital but all through that I can't help but be thankful for my precious little girl and all the support we continue to receive. Someone I love dearly always reminds me that even in the hard times we must thank God. I'm thankful today. Thanking all of you...
Love and Blessings,
Rachel/Mama
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Just a quick note from Dad:
People ask frequently how Maryah is doing and my response has always been "Good". For a while I just left it as that. Part of it was because that is all I could say at the time. The other part - that I now see (because of prayer) - is that she is always good because there is always God and God is always good and she is in God's hands. So help her to keep strong by knowing this piece of truth. We love you all, take care and God bless...
Dad/Zachary
Friday, December 9, 2005 3:21 PM CST
Good Afternoon!
Hard to believe that it is already so late. It seems like I just woke up and the day just started. This morning I visited with a new pain doc from Australia. He came in to assess Maryah and make some suggestions for her pain. As of right now we have taken her off of one pain med to try another. She was having some icky side effects and we are hoping they will go away. They are beginning to consider Maryah's pain as "chronic" and she will always need to be on some baseline pain meds for her knee going forward. It is likely that the compression fracture will not heal while she is on chemo. We have talked about a variety of approaches including pain meds as well as different integrative approaches like hypnosis (going very well), aroma therapy, hydrotherapy (pool PT), massage therapy, etc. It has been a long road and continues to be rough and I can only hope and pray that through God's grace we will all come through this with as much ease and peace as possible.
Tonight I ask for your concentrated prayers that Maryah's pain decreases significantly and that the new pain meds will work to alleviate pain for her so she can feel good and go home.
Thank you for checking in and I hope you have a lovely weekend.
Love and Blessings,
Rachel/Mama
Thursday, December 8, 2005 7:18 PM CST
Hello agian!!
Maryah here! How was everybody doing?? I am sure you all know from my mom that I am back in the hotel agian. BOOOOOO! The doctor's and I have decided that it would be best if I stayed over the weekend so that we can get all my pain under control and then go home when my pain is gone. Today, one of the nurses that workes up here on 4200 had the day off and decided she was going to spend her day off with my. We did a ton of stuff together. we made jewerly, watched movies and I learned a ton about nursing. Over the last couple of mothes Julie and I have gotten really close to eachother and have become really good friends. Now we are just hanging out. Daddy just brought dinner and in a little bit I am off to bed. Thanks for checking in. God Bless and have a great night.
Maryah
PS. Please keep Eli in your prayers. He joined me at the hotel yesterday so please keep him in your thoughts also.
Thanks
Tuesday, December 6, 2005 3:52 PM CST
Hi again!
Writing from the hotel where Maryah is resting comfortably with a little help from the pain killers. Although when I put some music on a few moments ago she popped right up and started movin'! It was very cute. Sometimes I think her being so uninhibited is great. She stands up for herself with the docs and dances like no one is watching....something we could all stand to do now and again. In fact when you're done reading stand up and dance like no one is watching in honor of Maryah...yes everyone will think you're crazed but oh...the smile it will bring to your heart and faces!!! Megan...please don't cut your foot when doing this okay?
CT scans were all clear and we're still waiting on the ultrasound results. Our dear friend Jenn came along to Maryah's room to do her ultrasound today. Jenn's hubby, Harry is in Iraq right now so we've been praying hard for both of them...don't hesitate to add he and Jenn to your neverending prayer lists. They will celebrate their one year wedding anniversary this Sunday apart and I can't imagine how hard that will be. Thank God for their undying love...keeps them close even when they are so far apart.
Okay, getting off on all kinds of tangents today...sorry. Maryah is still in a bit of pain but we are working on getting it under control. There is nothing new with this knee, we just know that when her counts drop to nothing it hurts worse and that it is taking a painstakingly long time to heal this compression fracture. It may not heal completely and that brings new fears and thoughts about how we go forward but right now we will keep praying and keep optimistic that all will turn around for the better and Maryah will be dancing again (up on her feet not in a hospital bed) very soon.
So here's to the dance...
Love and Blessings,
Rachel/Mama
Monday, December 5, 2005 8:09 PM CST
Good Evening!
Just dropping a line...unfortunately it's from the hotel tonight. Maryah is spending a little time here due to severe knee pain again. Well...on the bright side....we atleast know that there is no infection in her knee. Now if we can just figure out where the pain is coming from so we can treat it she will be in much better shape! That darn knee was bent for SO long and finally Miss M got it straight and now that darn thing won't bend. It's pretty bad pain so they are giving her some stronger pain meds to help her through. The pain started to give her trouble over the weekend but we had hoped to make it through using Maryah's newly learned hypnosis techniques. Unfortunately it's a little too much to bare! Everything else seems to be in good working order. No fevers and not sure yet what the blood counts are but we'll know in the morning.
Wish my little pumpkin could get through this and get back up on her feet (literally). So hard for her and so hard to watch. I am hoping it will be a short stay. Our friend Julie (Maryah's favorite nurse)got her into the "suite" so it will be a little nicer and a little more room to get through this visit. Although we don't look forward to being there Maryah is in good hands and I would much rather she feel good rather than be at home with uncontrollable pain.
So...we will get through this and start chemo again next Monday. Keep prayed up and it will happen!!!! I'm sure of it. God's grace is always present and Maryah will soar as she always does.
Morgan and I will get to go home and play a couple rounds of Pretty Pretty Princess (her favorite game). Maryah's in Dad's hands tonight and I'm sure they will have a good movie and some good sleep...Angie sent some pretty yummy cheesecakes (mini in a variety of flavors) for a special treat tonight also! Angie's always takin' care of us! Thank God for each of you who take care of us and make getting through the day so much easier.
Hope you know that we are humbled as always and grateful beyond belief.
Love and Blessings,
Rachel/Mama
P.S. Morgan says tonight it's a "bella luna" (beautiful moon). I always have thought that a beautiful moon means the coming of a beautiful day ahead. Smiling tonight!
Saturday, December 3, 2005 4:34 PM CST
Hello Family and friends,
Maryah here. This weekend we are spending it with Auntie Jo. We are having a blast. Today we have been watching movies and baking nummy cookies. I don't know if we are going to spend the night again tonight or not but we are for sure having dinner here and watching movies till late tonight. Well I am going to go eat. All my love.
Maryah
PS. Tomorrow is my Uncle James' birthday so please keep him in your thought's. Happy B-day U. James. I love you!
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Good Morning! It's actually Sunday as I journal at around 8:30 a.m. Maryah, Mo and I have just awoken and we're waiting patiently to make U.James some yummy birthday breakfast. He'll need to wake up first but what better way to start your b-day then to sleep in!?! So last night we decided to stay another night out here at A.Jo's house and we were surprised by natures light show. The Northern lights were out and the night was beautifully clear so we got to see them shining and moving about. This is something that I have never witnessed and therefore my girls have never witnessed so we had the priveledge of one of God's works of art. I was so pleased that they got to see this on a glorius winter night. I am typically not a winter fan but last night was particularly fabulous, being near family that we love, watching this magnificicent beauty. After that we snuggled down for some popcorn and a great horror flick...think we may have all had nightmares (haha) but it sure was a fun night.
Maryah is feeling good overall with just a little more pain in her leg than usual but still thinking about going to school this week a bit. Hope you are all enjoying our December thus far.
Love, peace and abundant blessings,
Rachel/Mama
Thursday, December 1, 2005 10:20 AM CST
Hello Family,
Just wanted to update you on the bone scan Maryah had two days ago. Everything appears to be clear! Maryah was having some pain in her left leg that was similar to the pain she had in her right leg when she was first diagnosed in January of 2004...so she is feeling some relief.
We try not to worry because it does not help, so we are learning to suspend negative feelings without being numb to the good ones. And when we find the news is good then we can allow ourselves to worry, because then we can feel relief. It is in that moment that we can thank God for Grace.
You all take care, much love, and many blessings to you...
Zachary/Dad
Wednesday, November 30, 2005 1:58 PM CST
Hey Everyone!!
Today I am feeling lots better than I was yesterday. I have a good mood and a ton of energey. On wedesday's my nuna "tends" to volenteer down at the raptor center when she has the day to herself and is not with me, anyway we decided to go down there and see all of our friends and our friends the birds. In a little bit we are going to make our way down to the clinic (agian) so I can pee in a cut to see if I have a urinary tract infection. what a joy. Well I better scadoodle. all my love and prayer's. have a good night and God Bless.
Maryah
Tuesday, November 29, 2005 6:56 AM CST
Good Morning,
We'll be heading into clinic today for an early visit with the docs. After talking to Dr. Slo yesterday we have decided it a good idea to keep Maryah on the Heparin injections for about four weeks and then do another spiral CT to see if there is anything that shows up. Again, they are unsure if this is a clot for sure but will treat it as such. Maryah's counts have come down and she is experiencing her typical symptoms, shortnes of breath, leg pain, mouth sores, etc, etc...
Poor baby. Seems there is lots to deal with. She is doing better as far as the whole big picture goes. No real fevers as of today and held her blood counts a little longer this time around. These are all positive things.
I am thankful for that. Maryah is good influence on me and she keeps me laughing even in the face of adversity! Last night I got a hysterical story about Dad's fish, a "big fat" fish to be exact and how it has panic attacks (Maryah compared the fish to herself in this way) and how it must have "freaked out" and "had a panic attack" and jumped out of the fish tank! It was quite the story and it took all my control not to wet my pants laughing. Maryah's sense of humor is a much welcomed piece of my day!
Well...I will update if anything changes or we hear anything new from the docs today. Have a beautiful day, drive safely and don't forget we all know how to drive in the snow...hahahaha! The much dreaded drive in the first few snow falls!
Love and Blessings,
Rachel/Mama
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Just as we expected Maryah's counts are down significantly. In spite of that her spirits are up and she is feeling pretty good with a healthy appetite. I love that! They are keeping her down at the clinic to give her some plateletts and then on to radiology for a bone scan. The scan was ordered since she is past her third round of chemo as a routine thing. Hoping it is all clear and everything is just as it should be. Guess it always is when it's in God's hands! We'll let you know when we know!
Take care and have a FANTASTIC rest of your day.
Hugs!
Saturday, November 26, 2005 2:47 PM CST
Good Afternoon!
Finally found some time to update again. Maryah got to leave the hotel yesterday in the later afternoon. She went with Dad out to Aunt Jannie and Uncle Jim's for a belated Thanksgiving celebration and then back to Mom's where we all decorated the Christmas tree and got the house all prepared in Christmas decoration. It was a lot of fun and Morgan was glad to be home too!
We enjoyed the evening. Today is a day of R&R. Maryah is in my room taking a nap as we speak. She is not feeling too well today, a little pukey and sore in the legs. Lots of rest needed as the counts come down again. They are taking a little longer to come down however so that means lowering the dosage of the Cyclo (chemo drug) is a little better for her.
So we will play it by ear now and hope she does well. Let's pray this blood clot dissolves and that she stays infection/fever free during this drop in blood counts.
Hope everyone is having a nice weekend!
Love and Blessings,
Rachel/Mama
Friday, November 25, 2005 11:06 AM CST
Good Morning! We got an early start to the day here at the hotel. The Nurse woke us at 6:45a.m. to go down to ultrasound. Just heard back from Dr. Messinger that all looks fine with the ultrasound and no further signs of clotting. They are not 100 ure at this point if there is a clot but there was a spot on the CT that they will treat as a pulmonary embolism. Maryah will go home today on a form of Heparin to continue thinning her blood. Her counts will be coming down each day now and actually low plateletts will help in this situation.
In the mean time Maryah's spirits are good and we are enjoying the snowy view from the suite. Looking forward to leaving for home later this afternoon.
Last night Papa Denny and Cousin Matthew brought a Thanksgiving feast prepared by Auntie Annie. She of course went the extra mile and sent food enough to feed an army! Zach and I had just woke from a nap and we were all hungry so it was perfect timing. We enjoyed turkey, mashed potatoes, Great Grandma Cella's famous dressing recipe and many other goodies including a homemade pumpkin pie! Auntie Annie you truly pulled through and made our Thanksgiving just like home! Bless your heart...we love you a TON! Thanks for making it so nice. You never go less than ALL the way beyond that extra mile.
We will keep you updated. Maryah will have to take it easy for a bit until we are sure that the clot/spot is dissolved and gone away. Let's hope that's soon so these twice a day injections can finish up!
Enjoy the weekend!
Love and Blessings,
Rachel/Mama
Thursday, November 24, 2005 11:10 AM CST
Happy Thanksgiving!
I would desperately like to say that all is happy today, but unfortunately we have another bump in the road. I know that Rachel, Zach, Maryah, and Morgan have so much to be thankful for...and if they were writing this, it would be said. Last evening Maryah was having severe chest pains, and was admitted to Children's ICU. They have seen a spot near her heart, and think it to be a blood clot. There is a great deal unknown at this point, and we have few details. They are giving Maryah a blood thinner, and are possibly going to do a CAT scan. As I said, this is all the info the family has. Maryah's regular doctors are out due to the holiday...so they are just waitng to find out more.
Rachel or Zach may update later, but I thought I would put this info out to you all now. We are asking for some major prayers today as we all give our thanks for our blessings!
Morgan will be spending Thanksgiving with our family, so that we can offer her a "normal" day, and keep her mind off her big sissy. Also, to give Rachel and Zach the opportunity to focus on Maryah. I know as Rachel hugged Morgan goodbye, trying to hold back the tears, that it is sooo difficult to leave one for the other. Please ask God today for the strength of these two courageous parents!
May joy fill your day and I give thanks also for each of you who support this family!!
God Bless!
Joanne/ Auntie Jo
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Hi all! Mama here. Thanks to Auntie Jo for updating for us. Just wanted to get out some info since we actually have some at this point. Maryah was experiencing some chest pain last evening while we were out to dinner and ice skating for Mo's birthday. Zach dropped us off and brought Maryah down to the ER. They did a CT scan and saw a spot that they aren't positive is a clot in her lung but pretty sure. There are tests to do but there is no definative tests for a PE (pulmonary embolism). We will treat it as such however and she is and will continue to be on blood thinners. We are currently hanging out in PICU but shortly we will go up to hotel 4200. They are cleaning out the suite for Maryah so she can by comfy while she is here. We will do some more follow up tests in the a.m. and then there is a possibility that Maryah will be able to come home as soon as tomorrow. Blood clots like these can be caused when a foriegn object is put into the body (her new port), when a child is not very active, dehydrated, etc, etc. I'm certain it's probably due to the port insertion and lack of recent activity.
So here we are. Thankful for the day, thankful for eachother, thankful that Papa Denny will be bringing us our Thanksgiving dinner tonight, thankful that Morgan has a chance to have a fun family celebration with Jo Jo and James. As always the blessings are ABUNDANT and I am just glad to be here celebrating Thanksgiving with my baby.
Have a BEAUTIFUL day and know we will be thinking of and praying for each of you today.
Love and Blessings,
Rachel/Mama
Wednesday, November 23, 2005 12:44 AM CST
Hey!!
It's Maryah!! Happy Thanksgiving (almost). Today is a very special day! It's my little sissy's birthday!! Well, She's not that little anymore. This morning when I woke up I found Morgan standing next to my bed penitently waiting to tell me that she was five and she was not a little girl anymore. It was such a lovely way to wake up. Tomorrow for Thanksgiving my family and I are planning on having Thanksgiving Day at my mom's aunt's house. It is not going to be to big of a party this year since a lot of my family are going to there husband's side. Well, I wish everyone the very best Thanksgiving!!! All my love and blessing's. God bless.
Maryah
Tuesday, November 22, 2005 2:55 AM CST
Well, it's about 3:00 a.m. and I felt the need to journal. I usually get pretty frustrated when I can't sleep but tonight I realized that it is most peaceful for me to be up in the middle of the night. No demands, no T.V., no docs, no nurses, no work just me and the peace of the moon shining through my living room window...usually...not tonight...it's a bit cloudy out! I really enjoy when the girls are sleeping, it reminds me of when they were babes and I watch over them as they look so calm and peaceful as well.
Maryah finished round three of chemo yesterday. I was pleasantly surprised in talking to her through the day that she was feeling as well as she was. Although she suffered a bit of nausea it passed quickly and she ate like a champ most of the day. Nuna reported eating eggs with cheese as well as applesauce in the a.m., easy mac in the afternoon and she certainly ate a healthy portion of beef stroganoff that I prepared for dinner as well as a little dessert. I think she's preparing her tummy for Thursday's feast at Auntie Annie's!
Maryah will begin working with a gal from the home care Nursing group this a.m. on self hypnosis. She will learn how to use this technique for pain control. I'm thrilled that this is available as a homebound service because it has been a challenge in between hospital visits to get Maryah in with someone who is only office based in this area of practice. It should be neat and I hope it will benefit her.
As we approach Thanksgiving in just a couple short days I count my ABUNDANT blessings. Amongst those blessings are each and every one of you and the immense love and support you bring to Maryah and to our little family every day! I am thankful for Maryah's strong spirit and willingness to put up this brave fight against cancer and for all of you watching through the ropes cheering her on. I am thankful for her "ringman", my strength for many years, her Dad and for our "manager" Miss Morgan who adds spunk and life to the fight to remind us that each cut, bruise and hard hit is another challenge to stand up and run at! Today I am thankful for this experience and all it has brought that has enriched our lives through both good and difficult.
I pray for each of you tonight... I pray that you are richly blessed, I pray that you are overwhelmed with peace and happiness, joy of heart and home. Tonight I pray for you to feel as happy I as I do right at this moment.
Happy Thanksgiving!
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I JUST GOT WORD FROM DONOVAN, FRIEND OF ELI AND FAMILY. THE LAPTOP HAS BEEN PURCHASED. THANKS TO ALL OF YOU WHO WERE SO VERY GENEROUS TO DONATE TO ELI'S LAPTOP FUND WE RAISED ALMOST $1200 TO GET THEM WHAT THEY NEEDED. BEST BUY WAS KIND ENOUGH TO OFFER SOME DISCOUNTS AND WARRANTIES AS WELL. MARYAH IS WORKING ON INDIVIDUAL THANK YOU NOTES FOR EACH PERSON THAT DONATED BUT IN THE MEAN TIME I WANTED TO GET A GREAT BIG THANK YOU OUT TO ALL OF YOU FOR YOUR LOVE AND SUPPORT. I'M ONCE AGAIN HUMBLED!!!!! GOD BLESS!
Love and Blessings,
Rachel/Mama
Thursday, November 17, 2005 7:20 PM CST
Good Evening,
Maryah went in this morning for surgery to get her new port. It went smoothly and the Doc did a fabulous job with the insertion as well as helping to remove part of her old scar. Auntie Krista was of course Maryah's OR Nurse as well so she was in good hands.
She had a good deal of pain after the surgery that has since started to get a little better. It will take some time for the tenderness to be gone completely and for her body to again adjust to this "foriegn" object.
She then went to Short Stay for chemo and finished up at a reasonable hour today. She will continue chemo through Monday and hopefully be feeling well for Thanksgiving.
We are also looking forward to Morgan's 5th birthday on Wednesday!
I will hope that Maryah is feeling a little better tomorrow and she can get an update on here herself. Thanks for checking in. We LOVE it!!!
Hope everyone is having a great week and looking forward to the weekend.
We are not pleased with this cold weather at our house!!!
Love and Blessings,
Rachel/Mama
Wednesday, November 16, 2005 1:11 PM CST
Hey!
Maryah here. Today I decided to have a change of scenery and come to work with Megan for some turkey bingo. I of course stink at bingo and didn't win a turkey but megan did. Great job megan!!!!!! In a little bit my nuna is going to come pick me up and we are going to go get a pedicure. we have been planing this trip to the solon to have our toe's painted for so long and now the day is finally here. tomorrow we are still planing on having my port put in and then right after that chemo. OH NO!!!! Well I am going to head out and go get my pedicure. all my love!
Maryah
Monday, November 14, 2005 3:57 PM CST
Good Afternoon!
Well....no port and no chemo today. There was a slight fever as there has been since Maryah's first staff infection in her Hickman. We had no current blood cultures so we drew them today then pulled her picc line. We will wait for those cultures to come back negative (as I am positive they will). We will pray Maryah spikes no temp after pulling her picc today and we will move forward with Plan B. If all goes as planned we will insert the port on Thursday and start chemo on Thursday. We need to get started but we also need to avoid further infections.
Let's pray for the best. We'll keep you updated.
Love and Blessings,
Rachel/Mama
Friday, November 11, 2005 9:45 AM CST
Hi all,
We are at the end of the week and approaching a lovely weekend. Maryah has had a bit of a rough week but she's hanging tough. Lots of nausea and pukey stuff as well as some med adjustments to correct some of these issues. We will be starting chemo on Monday as well as getting her port inserted. We will hope that all goes smoothly during this procedure.
Thanks for keeping up messages. Ry hasn't been feeling good enough to get on the computer but I still read her all your messages daily. So she knows you are there!
I also want to take a moment to thank everyone making donations for Eli's laptop. We are 1/3 of the way to our goal and may be even further after today. It's such a blessing to have a network of family and friends to call on when there is someone in need. Thank you for your extended support, kindness and generosity. Maryah is really enjoying this "project" and can't wait to get Eli his laptop.
I hope you each have a good weekend!
Love and Blessings,
Rachel/Mama
Wednesday, November 9, 2005 10:19 AM CST
Hey!!
It's maryah! How's is everyone?? Today I have a docter's appointment with Dr. Thopson. Hopefully we will be able to find out something new about this knee of mine. This morning I decided to come to work with my mom because she is only working part day since we have to go to the doctor. If we find out anything new today I will let you all now. All my love and God Bless! Have a great day!
Maryah
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Whew!!!1 I thought I lost hundreds of guestbook entries but luckily the fabulous folks over at Caringbridge were able to retrieve them and archive the messages so they don't get lost again! I am so relieved. Your messages are priceless to us and now I am going to get them on a disc so I know I've got them all saved!!!
Went to see Dr. Thompson today. He is pretty certain that Maryah does not have an infection and that she is dealing with a compression fracture where the prosthetic is inserted into her Tibia. This likely happened after she received her 1st round high dose Cyclofosfomide as that can make your bones more vulnerable. When her counts come down it bleeds into the knee therefore explaining the severe pain. He wants to stop her antibiotics right away and see what happens with her body while here counts are up. If she spikes a fever we will tap her knee after she's been free of any antibiotics for atleast 72 hours and then see if we get any different results. If it is by small chance an infection of the prosthetic knee they will have to go in and either wash the prosthetic or replace it. Niether of which is a really great option. If it is truly a fracture as he thinks it will take time and she will not be able to ambulate on the leg. She will also need to keep it immobile with a brace to protect it.
So, hurry up and wait I guess...as usual!
Maryah is the strongest kid I know and I am ever impressed with her ability to handle all that overwhelms us daily. I may have curled up in a ball and hidden from the world months ago. She still faces the sun and smiles at what will be rather than what is! I love my baby girl with all of my heart. I sure hope we can get her out of this pain very quickly. Keep prayed up! Thanks for your messages and for all of you that are donating to Eli's laptop fund! The checks keep coming and Maryah just keeps getting more excited! We love and pray for you all!
Love and Blessings,
Rachel/Mama
Wednesday, November 9, 2005 10:19 AM CST
Hey!!
It's maryah! How's is everyone?? Today I have a docter's appointment with Dr. Thopson. Hopefully we will be able to find out something new about this knee of mine. This morning I decided to come to work with my mom because she is only working part day since we have to go to the doctor. If we find out anything new today I will let you all now. All my love and God Bless! Have a great day!
Maryah
Wednesday, November 9, 2005 10:19 AM CST
Hey!!
It's maryah! How's is everyone?? Today I have a docter's appointment with Dr. Thopson. Hopefully we will be able to find out something new about this knee of mine. This morning I decided to come to work with my mom because she is only working part day since we have to go to the doctor. If we find out anything new today I will let you all now. All my love and God Bless! Have a great day!
Maryah
Tuesday, November 8, 2005 11:59 AM CST
Good Afternoon!
The week is going along and Maryah is still at home. She is not able to make it to school due to the pain yet but we're working on it.
In the mean time my precious girl is working diligently on her fundraising efforts for Eli's laptop. We here at work are also raising some funds (Judith, Eli's Grandmother works with me). It's fun!
So many people do for our family and it is nice to put our efforts into paying it forward.
Maryah will be meeting with Dr. Thompson at the UoM tomorrow to discuss options for determining what the problem is in her knee. We hope to have some more answers.
Monday Maryah will begin her next round of chemo and get her port put in on the same day. This will be good because the vein that the picc line is in is hurting her a bit. They don't want to use that picc line for more than a couple of weeks. In the mean time it serves it's purpose and it's working just fine for iv meds at home.
We will keep you updated and when we finally get a total for Eli's fund we'll let you all know. It's very exciting and Maryah has just called while I'm typing this to make me aware that she received some more checks in the mail today and she's working on adding them up and getting a "thank you" list together. Thanks to everyone who is making donations it is keeping our little one occupied.
As always you are all in our thoughts and prayers daily and we enjoy hearing from you when you stop by!
Love and Blessings,
Rachel/Mama
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We are experiencing some technical difficulties with the site and are working on getting back the hundreds of guestbook entries that we have lost. Hopefully we will be able to retrieve them as CaringBridge does a backup each night. Let's pray it works! It would be so sad to lose those precious messages.
Sunday, November 6, 2005 3:31 PM CST
Hello!
Maryah is home now and resting comfortably today. She got "sprung" from the hotel yesterday morning and enjoyed dinner at Grandma Caroline and Papa Gene's house. Today is a sleep day. Ry slept until almost 10am this morning and then again from noon until just a few minutes ago. She must need the rest.
She's still having some pain but not quite as bad as it's been. Enough that she likely won't make it to school this week but she can atleast be home.
I wanted to take a minute to thank all of you who have already sent $$ to fund Eli's laptop. I have already received a handful of checks and Maryah was so excited. It was so peaceful to watch her thinking further than herself to do this for Eli and his family. I was glad it gave her something to think of other than her own current struggles. I am so thankful that all of our friends and family are helping to provide for another family going through this. Once again, you don't fail to humble me beyond words.
We will keep you updated this week as Maryah will have an appointent with Dr. Thompson. My hope is that she feels well enough to update more herself!
For all of you that helped and supported us through Maryah's benefit at IHM-St.Luke's and for all those that continue to support us in all kinds of ways, I cannot begin to tell you the level of peace and calm that you have provided for us. I have had to be off of work for the past two weeks and I don't recall one day even worrying about it. That is the most incredible gift. Thank you again, I will continue to thank you. Know that each time my worries are relieved by all you do I stop and pray in thanks for all that each of you do.
Love and Blessings,
Rachel/Mama
Friday, November 4, 2005 9:44 AM CST
Good Morning! Maryah here! I am feeling a little better today. I have been eating mac and cheese (for breakfast). That's the first thing I've eaten in days! It's yummy! I am going to get off of the pain meds I am getting IV today and switch over to pills. My pain is a little better since my blood counts are coming up. I am working on getting of the hotel tomorrow. I think today I will need blood because my hemoglobin is still too low.
I wanted to tell you about our friend Eli. He is here at the hotel and Mom has made friends with his Mom. He has cancer too. It's called neroblastoma. Yesterday was a hard day for their family because they found out that the cancer has spread to his bone marrow (bow and marrow)and other parts of his body. I talked to Mom about some things we can do to help their family during such a sad time. They really need a lap top because the one they are borrowing is going away today. I would like to challenge my family and friends to raise enough money to buy the family a laptop. I know that it is really nice to have ours here when we are at the hospital and they will actually be here more than we are and that is ALOT!!!
If you can donate any amount please send in an envelope to
Eli's Laptop c/o Maryah Tift at 1171 Englewood Avenue, St. Paul, MN 55104. Anything you can do will be great even if it's just a dollar. I really want to do something great for them because so many people have done great things for me only I cant afford to by them a computer. I know we can do this for them. Let's try and get them a laptop by next Friday. That gives us a whole week to raise the money. Thank you for caring about me and caring about kids with cancer.
I will let you know when I can get out of the hotel. Should be soon. Maybe even tomorrow. Lots of love to everyone and I miss you all alot.
God Bless,
Maryah
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Hi all! Proud Mama here! I can't begin to tell you how proud I am of Maryah for her thoughtfulness. I asked her if she would like to do this for Eli and she immediately got on our lap top and did the journal entry this morning. I didn't know how good it would make her feel and the healing it would bring her to try and do something for someone else who is struggling. My cup runneth over...
She's coming home tomorrow. Praise GOD the oral pain meds are covering the pain adequately and she's coming home. No fevers for two days, no positive blood cultures, all good stuff right now.
Lots of love!
Rachel/Mama
P.S. In order to visit Eli's site you go to www.caringbridge.org home page, click on visit a site and type in eliknight1 (not under the classic site version). He was just here to visit with Maryah about what it's like to be bald. He's one brave little guy! We're sure rootin' for him!!!
Thursday, November 3, 2005 11:10 AM CST
Good Morning!
Just another quick update since we've been incommunicado lateley.
Maryah just got upstairs after a bone scan. Dr. Messinger ordered this as another measure to check for infection in the bone. It is also good to do to check for any tumor activity. No results as of yet but we just got back upstairs. Maryah made me promise to tell you that she is sorry for not being able to handle visits right now. She is feeling badly although our new rule is NO SAYING SORRY FOR ANYTHING!!!! We're trying to replace that word with something else. She's so concerned about everyone else and I am just so concerned for her. She is going to rest again today with Doctors orders for no visitors or phone calls since yesterday was such good medicine. She was really able to rest with no anxiety and Julie, her Nurse was so quiet coming and going that Maryah rarely knew she was even here. Julie was a God sent yesterday as she would come in before the pumps had a chance to beep so they wouldn't wake Maryah while she was resting. It was such a peaceful day for both her and for me. Honestly, it gets overwhelming some days.
We are working on some projects so when she is awake and alert we have some things to do. Although there aren't too many of those times right now.
Today we will try again to get Maryah turned over to some oral pain meds. This should help to transition us home again soon. They mentioned tomorrow but we will see how today goes first.
Thank you all for keeping updated and leaving messages. It's hard to not communicate but the website is a great tool so Maryah knows that you're all still out there thinking of her. Each time she wakes I go the site and read to her.
Well, I am off to have some lunch. I hope you are all having a fabulous day. Sending lots of love and hugs!!!
Love and Blessings,
Rachel/Mama
Wednesday, November 2, 2005 9:10 AM CST
Good Morning!
I truly wish I was not the one here doing this journal entry and that it was Maryah. I know I feel better when she feels good enought to do them herself!
Today is going to be a quiet day. I just did rounds with all of Maryah's docs out at the station. They were all meeting and invited me to join them in a plan coordinating meeting. The first order of business was the sign to go up on Maryah's door that no one including doctors are to enter her room today. Her anxiety levels go through the roof when people come in recently and she has had a lot of trouble coming down from that. We are working on oral/patch pain meds to go home with but will not try anything new until tomorrow. The plan for today is to keep her quiet and resting with no changes in meds, etc. There are too many docs, too many meds and too much going on around her. I am even feeling a bit overwhelmed by all of it so I know she is.
Tomorrow we will work on changing over some pain meds to get her home on. We are looking at Friday right now.
As much as I am so thankful for visits and phone calls because it always helps with the long stays here at the hotel I have to request no phone call and no visits. If Maryah feels up to calling on the phone she will. She is in dire need to get through this issue and this stay has not been a good one. Please know that this does not mean we don't appreciate the visits or the calls it's just necessary as a means to get her rested and well.
Yesterday afternoon we did a knee tap and removed more blood with no obvious infection. The results of those cultures will take some time to come back. They also inserted a picc line after we blew out a couple IVs. We will go the OR for a new Port to be put in sometime next week when her counts are up and if she is feeling a little better.
I feel so blessed to have such an incredible daughter, so blessed to have the job God has entrusted me with. I couldn't have ever dreamed of a better life. Watching over her and being present to witness how she touches others is something that I will forever learn from and hold dear to my heart. Thank you for letting Maryah touch your life. Thank you for touching mine. You are all such a HUGE part of her successful recovery. I read her your messages every day and she just smiles so sweetly. Thank you for that. It means the world!
We will keep you updated as we figure out what's all going on here.
Love and Blessings,
Rachel/Mama
P.S. Please pray for our friend Eli, he is the grandson of a woman I work with. We ran into their family here last week when they got news that he has Neuroblastoma. They found a tumor in his belly upon his being admitted for apendicitis. He is a few doors down from Ry today and his family is getting to know the hospital. They are fine people and they have a very hard journey as we all well know. When you say your prayers today stay prayed up for little Eli too.
Monday, October 31, 2005 5:21 PM CST
Happy Halloween!
Maryah here wishing you a fun and SPOOKY Halloween!!! I am a little bummed that I can't go trick or treating but I am okay here at the hotel. They have finally gotten my pain under control a little better. I am glad about that. It's been pretty bad lately.
Tomorrow I will be getting a pic line to last until I get a port put then I won't have to have all these IVs. When they do the pic line they will tap my knee too. That will be tomorrow morning at around 8:30. I hope they figure out what's going on so I can get out of here.
I want to thank everyone for writing me messages and supporting me. Every message that I get makes me feel 100% better and I love it. Thank you!!!
I will write more when I am feeling up to it. Have fun and get LOTS of candy!!!
God Bless,
Maryah
Monday, October 31, 2005 3:25 AM CST
Good Morning!
Here I am doing the 3am thing again! Silly, but can't sleep again at the hotel...not much peace and quiet around these parts!
Sunday was a hard day for Maryah. Her pain was intolerable most of the day with most of the day spent trying to get it back under control. We went to CT early in the day where they determined she does have more fluid and some "debris" around the knee so it does need to be aspirated again this afternoon. Dr. McDonald here at Children's will do the aspiration. Dr. Thompson recommended he just do it here. We will determine if we are looking at more blood in the knee or puss. If it is puss we know for certain we are looking at an infection. Knowing one way or another is good because then we can treat her effectively. The bad news that comes with an infection is that she would likely need to have her prosthetic knee replaced.
It's very much a catch 22 because we want to know what's going on in that knee but we don't want it to be a serious infection that requires this replacement. I don't know what to hope for, what to pray for at the moment. I guess I just keep praying that He will comfort her and help us find out the best way to get her through this "bump".
We finally got the pain to a tolerable level at about 7pm and gave her some Ativan to relax her. This helped to get her into a sound sleep where she was able to rest. She just woke a short time ago but that didn't last more than 1/2 hour. She is now back into a sound sleep and hopefully her body can heal some more with rest.
Some struggles, such as pain are very hard to witness as a parent. Pain has such a crippling effect on the body, mind and spirit and it's the only thing that I see that will bring Maryah down. So I guess I figured out just now what I will pray for...no more pain, strength for today, just for today. One day at a time.
Once again, the Nurses here are so fantastic. They are so considerate of Maryah. They always take their time to listen to her, give her hugs and help take care of the problems immediately so she is comfortable. They are a God send and it is such confirmation that we are in the right place. They seem to know when I have burnt out and just take right over. It's a nice relief and I know they care for her just as much as I. Good people.
Well, it's off to try and sleep a bit before daybreak and the steady stream of Docs at Grand Rounds.
Have a wonderful start to your week and a fun Halloween!
Love and Blessings,
Rachel/Mama
Friday, October 28, 2005 3:35 PM CDT
Good Afternoon!
Okay, it's my turn to gush now. First and foremost I want to wish Zachary/Daddy a very happy 30th birthday! Maryah, Mo and I wish you the best day and completely love you to pieces!!!
Now, I am still in complete awe over last night! It was such an INCREDIBLE night. Beyond all the fun that I had seeing everyone and getting a chance to meet so many wonderful people, I got to watch my baby forget about her cancer for four whole hours plus some!!! I don't think I saw Maryah do anything but smile and soak up every moment of this beautiful night. From the time the limousine picked her up at the hospital and dropped her at school until the moment I kissed her good night when she was back in her bed at the "hotel"...she never stopped smiling!
The gratitude I feel for all the hard work that so many of you put into last night and for the kindness and generosity that so many of you offered by just being there is beyond words. My gratitude is even greater for the joy and peace you each brought for Maryah last night.
I am COMPLETELY humbled by the whole thing and I just can't find the right words to express it.
Maryah has had a big day today. Although all she really wants to do is sleep she has been poked and prodded all day. We went down this morning to short stay where they put Maryah under and removed her Hickman line. We removed the line as it is a source of continuous infection and also because we have made some decisions in regard to Maryah's treatment going forward.
I am going to keep this part brief so as not to make this entry a novel. The long and short of it is that Zachary, Maryah and I have decided NOT to do the High Dose Therapy and Stem Cell Rescue at the UofM. We will continue to treat Maryah with standard chemo medications here at Children's. She is going to have a total of 8-10 rounds (we are already down 2 rounds). This is a positive decision. We all three feel an enormous weight has been lifted and their is an inexplicable peace and calm that comes with making this decision. We feel that the sign we were waiting for arrived and now we are at peace in fighting forward. We are getting positive confirmations on this decision from our team of docs too. This means of course that Maryah will not be quarantined and will be out for the holidays, for her sister's birthday. It also means prolonging of treatment (this chemo will take her into late March or April). We are ready for whatever it brings and we are "all prayed up". Tears are done, fear is gone and it is time to push ahead.
Thanks to our friends, family and all those concerned with Maryah's well being we will have all the support we need through each of you and we will as Megan so eloquently puts it "KICK CANCER'S ASS".
Thank you all for a beautiful and heartwarming evening last night. There is no better medicine for the heart and soul than being surrounded by family and friends.
All our love and many blessings,
Rachel/Mama
P.S....It's Megan here...we raised $15,500 and the total keeps on going up due to the SUPPORT of all of you!! We fed close to 500 people!!!! THANK YOU...we passed our goal of $10,000 - way passed it - I am simpy amazed by all of you. Thank you for making my friend smile-the smile on her face was huge, but the smile in her heart...is priceless!!!! I love you Ry..Megan
Thursday, October 27, 2005 10:11 AM CDT
Good Morning!
Posted the pics from Maryah's visit with the MN Wild players last night so if you haven't seen them yet take a peek. They are pretty cool!
We are at the hotel getting the princess primped for her big night tonight! Doing nails, making sure meds are all scheduled around the party and such. All these things to do to get a girl ready for a party!!!
Maryah is so excited for tonight she is nearly jumping out of her skin.
Megan called this morning to let me know that "her limo" would arrive this afternoon to transport Maryah to the big event. When I told her she cried she was so excited.
So she will be arriving in style! Thanks for arranging that Meg! Very special.
Our visit with Dr. Thompson was short and sweet as usual. He still believes that Maryah has a stress fracture causing the pain in her knee rather than infection. They have ordered her to be non-wieght bearing for several weeks in order to try and heal this up.
Maryah has NO White Blood Cell count so tonight we will be extra cautious in the big group of people.
We're getting ready and can't wait to see everyone. Hope you are all as excited as we are!
Maryah sends her love from the hotel as well and asked me to say "See you tonight!"
Love and Blessings,
Rachel/Mama
Wednesday, October 26, 2005 12:02 AM CDT
Good Morning,
Here at hotel 4200 we have many experiences, usually not of an excellent nature...however...today was EXCELLENT!!! Two of the Minnesota Wild players were visiting the hotel. Wes Walz and Duane Roloson were here for a bit this morning. Maryah got to spend some time hanging out and chatting with them. Of course we asked them what the heck happened last night with Vancouver. Duane Roloson blamed Wes Walz and Wes Walz blamed it all on Roloson!
These are a couple of the nicest guys. They spent some time signing autographs and just talking with some of the kids. It's mornings like this that make a hospital stay much more fun for Miss M.
I have some great pictures that I will post later tonight after I get home!
We are going to be leaving the hotel on a pass to go visit with Dr. Thompson about Maryah's leg this afternoon. Hopefully he will be able to come up with some answers about long term relief. I'll update when I know.
In the mean time Maryah's counts are still down but she is feeling pretty good. We are planning on getting that pass out tomorrow too. She may not be able to stay for the whole event but definately part of it. We will see how things go along tomorrow.
Unfortunately, Maryah will be staying here for a bit due to her counts, fevers, need for blood products, pain control, and guess what? another infection in her line. This darn Hickman line is such a pain in the rear.
One day at a time I say. Always just take things one day at a time.
Well, we are off to see what we can find out soon and hopefully Maryah will be up to doing the next journal entry herself!
Love and Blessings,
Rachel/Mama
P.S. Check out the new WILD pics on the picture page!!!
P.S.S. I made a mistake on yesterday's entry. The dinner tomorrow night will be held in the Dining Hall NOT the auditorium. Sorry. Looking forward to seeing everyone.
Tuesday, October 25, 2005 11:25 AM CDT
Good Morning!
We are here at "Hotel 4200" and Maryah is resting, actually she is sacked out. She's getting a blood transfusion and her antibiotic right now so she has to get Benadryl as a pre-med. This usually knocks her out and she sleeps for hours. This is a good thing as she did not sleep very well last night.
We have been talking with the docs this morning and they are pretty certain that Maryah has a recurring infection in her knee. They are certain that we have to find an accurate way to clear this infection up. It seems to be okay when her counts are up and her white cells can fight it off but when her counts bottom out this infection rears it's ugly head and the pain is intolerable.
The plan as of right now is for her to come home tomorrow on IV antibiotics which she will likely stay on for an extended period of time to try and clear this infection. They will also get her on a Fentenol patch for pain. This plan is of course contingent on her blood cultures staying negative for 48 hours (24 to go) and no break through fevers. Maryah will meet with Dr. Thompson tomorrow afternoon and we will consult with him on appropriate treatment for this knee infection. Hopefully we can find some answers and take care of this.
We are fast approaching the BIG event on Thursday. Everyone is working diligently to make it a HUGE success from what I hear. A great big thanks to all the parents at IHM-St.Luke's and our dear friend Megan Barrett-Martin for all they are doing to put this event on in Maryah's honor. We are already talking to the docs about her participating in the event. They seem pretty sure it will be okay! We'll hold on to that and pray for her to feel well enough to make it even if just for a short while.
We will keep you updated as any new info comes up. We are looking forward to seeing everyone on Thursday!
If you need info on the dinner please click the link to Maryah's other site below. The event will be held at IHM-St.Luke's on the corner of Summit and Lexington Aves in Saint Paul. It will be held in the auditorium.
Have a fantastic day!
Love and Blessings,
Rachel/Mama
_______________________________________
Hey!!
It's maryah! Back in at 4200. I am not to happy about it but I am having less pain then I would if I were at home right now. I am on a fentanile drip and they just put a fentanile patch on my knee so now around 3:30 or so they are going to stop the fentanile drip so that the patch will start to help. I am really looking forward for the fundraiser on Thuresday! It's going to be sooooo much fun! My dad and I went and picked out a really really cute outfit. THANKS DADDY!! Well I am going to go and rest but I wanted to thank all of you for keeping posted and writing all the nice mesages!! Thanks agian! All my love and God Bless.
Maryah
Monday, October 24, 2005 7:47 PM CDT
Hello again!
Maryah is back at the hotel...unfortunately. This time she's more than a little mad about the whole thing. It's finally wearing on her to be stuck there so much. I sort of figured it was coming but I wanted to hope not.
So she is having lots of leg pain again, very low blood counts and fever. They are once again pumping her full of antibiotics and monitoring her. They say it is just for tonight but it doesn't always work that way. One way or another we will get her to the dinner on Thursday at least for a bit. If she's still in the hotel we'll talk the docs into a short pass out. They aren't concerned with her being in public as much as clearing any infection causing the fever. Never fear...Maryah's here!!! She'll get there I am certain of her persistance.
We are looking forward to it and cannot wait to see everyone there.
I will be bringing the laptop down to the hotel tomorrow morning so send lots of messages so she has lots to read and keep her encouraged!
We love you all lots and thank you for your concern. Thank you to everyone for the kind birthday wishes as well. Let's not forget Zachary is only one week and 12 hours younger than I...he will be the big 3-0 on Friday! Sorry Zach, had to be done. Love ya!!!
Love and Blessings,
Rachel/Mama
Sunday, October 23, 2005 7:57 PM CDT
As Miss M's blood counts come down after chemo now she is starting to feel a little bit miserable. To be expected but always hard. The tail end of the weekend brought more knee pain, increased fatigue and overall feeling of the icks!
It's hard when Maryah feels cruddy for all of us. Hardest on her but hard to watch when we feel so helpless. She will stay home from school tomorrow and get some rest and keep her leg elevated. We will be getting her back in to the UofM to check her knee out as the pain hasn't subsided much. We're still unsure of the source of the pain. We're hoping she will be well enough to make it to the fundraiser on Thursday but we will need to take precautions to keep her from picking up unwanted germs while her counts are down.
A big thanks for checking in. We hope you had a great weekend. Congratulations to Aleisha on her wedding...sorry we were unable to make it out.
Love and Blessings,
Rachel/Mama
Friday, October 21, 2005 7:56 PM CDT
Hey!!
It's Maryah!! Today was my last day of chemo for the week, YEAH!!!!! Right now we are out at my A. Jo's house celebrating my mom's birthday. HAPPY BIRTHDAY MAMA!!!!! We had a speical dinner for her, we had Filet Mignon, baked potato's and corn and decided to eat almost the entire pan. HAHAHAHAHA. We just got done having some of the best cake and ice cream in the world!!!!!!!!! By the way... It was homemade cake. Uncle James gave mom two dozen roses. THANK YOU UNCLE JAMES!!!!!!!!!!!!!!!!!! Now I am off to watching some movies and hanging out. I LOVE YOU MOM, HAPPY 30th!!!
Have a good evening everyone!!! God Bless and good night!
Maryah
Friday, October 21, 2005 2:15 PM CDT
Good Afternoon!
Well, she made it through the week with flying colors. I haven't updated so as not to jinx her feeling well. Not much nausea, blood counts still doing okay today and she is overall happy and doing well.
I wanted to get out a quick note to update. Hopefully everyone will have a good weekend and enjoy themselves.
Love and Blessings,
Rachel/Mama
Monday, October 17, 2005 9:28 PM CDT
Good Evening,
Just a quick note before heading to bed for the night. It's been a long day and Mama is tired too! Morgan and Maryah are already fast asleep.
Chemo went well today with little nausea and a bit of a long day at the clinic. Back tomorrow for day #2.
Tonight was lots of fun as we got to visit with Aunt Connie and Uncle Cliff from WI and Aunt Audrey and Uncle David from MA. Dad, Mom and Mo had a little early birthday cake and we got to spend a nice evening over pizza and salad with family! It's always nice and comforting. I'll have new pictures up soon with pics from the evening.
It's going to be a long week with clinic every day but Maryah's new thing when I ask her (better yet...nag her) with the question "How ya feelin' Ry?" her response with grand enthusiasm (well, we're working on grand) is "FANTASTIC MA!" Mind over matter as I always say. Sometimes that's harder than I would like it to be for our little pumpkin. That trademark sparkle hasn't left her eyes and as long as it's there I know our little girl is fighting hard from the inside out!!! As we have said from the beginning "CANCER IS NOT FOR SISSIES!!!!"
We'll keep updating through the week.
Love and Blessings,
Rachel/Mama
Friday, October 14, 2005 8:12 AM CDT
Happy Friday!!!
Hope everyone is enjoying their week. It's been a beautiful Fall week and we are certainly enjoying it. Maryah has been at school for the majority of the week with a few small bumps where she wasn't feeling great and came home a bit early. Today she's having a lot of leg pain so she will be keeping it elevated and staying home for some R&R. Maryah did however make it through her school marathon yesterday!!! Way to go Maryah! Thanks to Maryah's friends who have been helping her get around school a little easier this week. You're great!!!!
We will be starting chemo again on Monday and we're praying that she will make it through without too many bumps along the way.
Maryah will update soon. We'll get her on the computer so you can hear right from her. Have a fantastic weekend and we'll update if there is anything new to tell!!
Love and Blessings,
Rachel/Mama
P.S. Congratulations to Cousin Cari out in Boston!!! She has been accepted as a runner on the Dana Farber team for the next Boston Marathon. She'll run in honor of Maryah and another good friend of hers struggling with breast cancer. We're very proud of you Cari!!!! Cheers!
Wednesday, October 12, 2005 7:33 AM CDT
Good Morning!
Miss Maryah made it through the entire day at school yesterday and came home with homework to boot! She is very happy to be back at school with the best group of friends a girl could have. I know that I have said before how proud I am that Maryah has such a remarkable group of girlfriends but I have to compliment again. I get messages from some of the Moms of these fabulous girls and we are all so touched by the uplifting of heart and soul that occurs when they are together. I truly have never experienced anything like the dynamics that this group of kids bring to the table. These friendships surpass any and all dreams and prayers I have had for Maryah as she has grown.
I have always said that I believe God has a greater plan and we may not always understand at the time. When St. Columba closed Maryah was saddened as were Zach and I. Upon joining the IHM-St.Lukes community we are overwhelmed with the amount of support and that not only Maryah is receiving but the support offered to Zachary and I daily. It goes without saying that there are so many to thank when it comes to support and love coming our direction in various ways. I woke at 3a.m. with these amazing kids and their families on my heart. I needed to come on today and just let you all know how dear you are held in our hearts. With gratitude beyond words I come today to thank you, each of you that are out there, praying, supporting in any way you can. There are no words...
Love and Blessings,
Rachel/Mama
Tuesday, October 11, 2005 7:56 AM CDT
Just a quick update until Miss M gets time in her busy schedule to update the journal herself...
Maryah went to school yesterday!!!! She made it half of the day before her leg was giving her trouble and she needed a rest. She is going again today only this time with the wheelchair for a little assistance in the walking department. Maryah is doing great. Since her counts came back up last week she has really had lots of smiles and energy and even with her knee hurting she is doing pretty well overall. We did postpone the chemo that was to begin yesterday. We will start next Monday in order to give her body a rest and time to recoup. I am so happy to see her smile and have a good week. Visiting with all her wonderful friends at school is the best medicine she could have.
Lots of smiles coming your way today. Enjoy!
Love and Blessings,
Mama/Rachel
Monday, October 10, 2005 9:31 AM CDT
Big News...
Maryah is at school right now!!!
She made it to the first day and a half of school and this is her first time back. Many of the teachers and students have been eagerly awaiting her return so she's getting all loved-up.
She'll write more later.
LOVEstrong
Zach/Dad
Saturday, October 8, 2005 1:30 PM CDT
Hey!!!
Maryah here. Happy Saturday!! I am free from the hotel... in other terms the dump. HAHAHA. Today we are spending the day out at my Aunty Jo's house. Yeah!!! We are going to wait and do chemo not next week but the week after. That will give some free time and some time to go to school. I am looking forward to going to school on Monday. Yippee! On Friday we are going to go to the clinic so we can do counts to make sure that I am ready for chemo on Monday. Well I am going to go visit. All my love. God Bless.
Maryah
Friday, October 7, 2005 10:12 AM CDT
Good Morning,
We are here at "Hotel 4200" and getting ready for Friday morning BINGO!!!! Always a fun pass-time here at the hotel. Maryah is resting her eye-lids right now. I got her up to shower and exercise a little this morning. By exercise I mean she walked on her crutches to the deck for a breath of fresh (cold) air and then back to her room. That about wore her out. When in bed for all of these days the smallest task seems to be a bit of a challenge. She was up for it though. Although we had originally talked of the plan for her to come home today it looks like we've come to another "bump" in the road. Her knee is getting better each day with pain a little easier to manage however...she now has another infection in her Hickman line. We are waiting for today's blood cultures to determine if the antibiotics they are running through it are clearing it up or if we will have to try some other measures of clearing it. In the mean time Dr. Slomiany does not want her to go home until this is resolved. So we are now on day 9 of being at the hotel and still praying for everything to come around so we can get the girl home!
Maryah is still in good spirits however and as usual just goes with the flow. I think we are all learning again how to accept this minute-to-minute lifestyle.
I also wanted to take a minute to thank everyone again who put all of the effort into tearing my roof off. I have decided to hire a professional roofing company to complete the job. They will be able to begin and possibly complete the roof on Monday. I am afraid with my luck the way it has been there will be a blizzard in the next couple of weeks and we would be in big trouble. Thank all of you willing to come out and help this weekend also. I hope you enjoy the peace of your weekend and get a little R&R, enjoy the crisp autumn days! You are all such a blessing to us and we thank you so much! Enjoying your messages here at the hospital too. Maryah may post later on if she's up to it. I am still encouraging her to get on so you don't have to keep reading my boring reports!!!
Love and Blessings,
Rachel/Mama
Wednesday, October 5, 2005 8:42 PM CDT
Hi again!
It's a new day as evident by Maryah's smiles and positive attitude. She informed me today that I must have PMS because I am so weepy and can't seem to stop crying. I am crying at the doctors, crying at work, crying at home, crying in the car! Seems that I am really all prayed up because as Zachary has taught me tears are the purest form of prayer...and as Maryah has recently reminded me also a sign of PMS!!! Big smiles! Maryah is feeling quite a bit better today. They are weaning her off of the heavy pain killers and working towards some oral pain killers to help her get home. We are shooting for Friday to get home. Maryah will have to use her crutches and wheelchair so not to bare weight on the punk knee. Hopefully it will heal and pain will diminish with time.
We begin another round of chemo on Monday as far as the plan goes. Although some of Maryah's blood counts are acting stubbornly and won't come up to good levels like hemoglobin and plateletts. Darn blood counts!
So...another bit of excitment for the Tift family...we had a little rain in the house last night. Unfortunately due to the heavy rains my first floor cieling sprung a couple of small leaks. Brian in all his bravery came over quickly and got tarps up on the roof in the rain and lightning. After I was done having a slight panic attack from being so nervous about him climbing on a slippery roof we talked a bit about a plan! If there is any lovely soul out there that knows how to shingle a roof Brian would love some assistance in order to complete our roofing project a bit quicker than originally planned. He will be at the house on Friday and Saturday and if you think you'd like to help just go to www.maryah.net or click on the link below for Brian's contact information. I truly appreciate all everyone is doing to try and make life easier for us.
Looking forward to getting home, spending time with Mo and just living outside of a hospital...the time is coming!
Thanks for being so supportive always in our ups and downs. It certainly makes the times we crash a little softer and easier to land. Sending hugs and smiles to each of you!
Love and Blessings,
Rachel/Mama
Tuesday, October 4, 2005 3:52 PM CDT
Hi again!
Another day and no new answers. Maryah has had a rough day with lots of nausea and throwing up. There doesn't seem to be any break in the knee pain and no news of any infection from the tests at the UofM. We took x-rays of the knee again today and there is no obvious stress fracture. Maryah will be unable to bare weight on her knee for some time in order to let whatever is there heal. There is also a minor infection in her Hickman line that they have to clear up.
Although I wish I could come here and load you up with positive and happy news all the time it just seems to be a rough time for my baby right now. There is not much of a break in these "speed bumps". I wish I felt more positive at the moment but at times it is hard to maintain that level when all you want is for your child to be well and doing the things that all their friends are doing. Although my spirits are a down Maryah still keeps smiling in between feeling like junk! Amazing! I wish I could manage her grace under pressure.
We are looking at getting everything handled and get Maryah home as soon as possible. We are looking at Thursday or Friday right now.
Maryah is finally sleeping peacefully and I think I will attempt a nap myself.
Hope all is well with each of you.
Love and Blessings,
Rachel/Mama
Monday, October 3, 2005 2:47 PM CDT
Good Afternoon!
Hard to believe it is already almost 3 in the afternoon! We got up around 6a.m. to get ready and the ambulance came to pick us up by 7a.m. Once we got to the UofM we had to wait a bit because...surprise, surprise they were running behind. Maryah actually had the knee aspiration at around 11a.m. and it only took about 10 minutes. She came out of her anesthesia very well and was happy, she had quite a bit of medication on board so she felt no pain for the first time in days. She actually said she felt some relief in her knee. They aspirated around 3oz of blood from the knee and it will be tested and cultured for infection. Hopefully we will pin point the cause of this pain and treat it quickly. The pain free moment didn't last long and Maryah was quickly sore again but is now back at Children's and resting comfortably. She is on bed rest for at least 24 hours with no wieght bearing on that knee for quite awhile. We won't know more about the fluid they removed until tomorrow. We'll keep you updated as we get information. Looks like "hotel 4200" will be home for a bit longer. Maryah told Dr. Slo that she was perfectly content to be here as long as there is no more pain. Poor baby is really feelin' crummy through all of this. Counts are coming up a bit but slowly.
We are glad to be back and sadly enough being here at Children's is comforting and feels a bit like "home". Enjoy the beautiful warm weather today it sounds like the chill is coming.
Love and Blessings,
Rachel/mama
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Hey, It's Maryah here!!
I am back at "home" (the hospital). The procedure went well today. I woke up in the recovery room and I was in no pain what so ever and then we got on the ambulance and that's when the pain REALLY started to kick in. I am just taking it day by day. Hopefully we get get this leg pain under control soon so that I can ditch the dump hole. It feel's like I haven't been at home for 80 billion year's. Sorry, I can tend to exaggerate a lot. hahahaha! Well, I am going to go rest and hopefully I will be writing again soon. All my love.
Maryah
PS. I want to say thanks for everyone family and friends for writing to me costantly!!!! I love you all!!!!
Saturday, October 1, 2005 5:37 PM CDT
Good Evening!
I have just heard from Zach a short bit ago that the roofing is done for the day. The guys figured they moved about a ton of shingles per hour for seven hours today! THANK YOU ALL SO VERY MUCH FOR THIS HUGE AMOUNT OF WORK!!!! I appreciate each and every one of you that helped in any way: Megan and Brian, Brian and Elaine, Nate, Jonny, Sam, Nate, Chief, Dianne and Jim Martin for feeding this crew!! You guys will never know the gratitude. This was a lot of hard work and I can't thank you enough. All the while you were offering your help at the house I was able to be here with Maryah. I am grateful beyond words for that.
Speaking of Maryah McGee...queen of the sea, our huggable little honey bee...(sorry, it's a song I used to sing her as a baby when she couldn't sleep at night, worked like a charm). Anyhoo...Maryah has had a better day. Her white blood cells are slowly coming up and her hemoglobin was very good. She needed another platelett transfusion today but she has not yet spiked any temp as a reaction and her plateletts just drawn half of an hour ago are up in the 50 thousands now! Much better. She got up and out of bed using her crutches this morning and sat on the couch for a bit. We've been reading, watching the Whale Rider and taking brief naps between pumps beeping and nurses coming in for this check and that check. God bless their hearts!
I read a story today that reminded me of Maryah and I thought I would share:
There was a young girl who was not home from school on time. Her Father was a bit annoyed and also a bit worried. When she finally came home her Father angrily asked where she had been. She explained that her friend Julie dropped her doll and it broke into pieces. Her Father asked "Oh honey! You stayed to help Julie pick up the pieces of her doll and put it back together?" "No" the girl responded "I didn't know how to fix the doll, I just stayed to help Julie cry."
When we don't know how to fix the broken pieces we can only stay to help eachother dry the tears and ease the pain. Thank you to all of you precious friends and family members that do that for us daily.
With my deepest gratitude,
Rachel/Mama
P.S. If you haven't seen the sunset look out your window. We've got a great view and it's magnificent! As Morgan would say "Look what God painted for us Mama!"
Friday, September 30, 2005 10:01 PM CDT
Hi there!
In the quiet of the hospital room I decided to update quickly before attempting to get some sleep. Maryah is still at "hotel 4200". She is having tremendous pain in her knee due to some fluid and unexplained inflamation around the knee. She went by ambulance to see Dr. Thompson this morning and he recommended she stay at the hotel through Sunday evening at least. If she is no better, pain is not relieved on it's own by Sunday we will go back over to the UofM where he will tap her knee and drain the fluid in the OR under general anesthetic. Dependent upon her progress this weekend she may or may not be here into next week. The good news is that she is in the "suite" up on 4200. It is a very nicely decorated and very large room. It actually does feel a bit more like a hotel room rather than a hospital room. She is in good spirits with the pain meds running but unable to move her leg much at all. We are unsure what caused this other than it may have been all of our walking at the Wild game last week. That was a lot of walking after a long period of being in bed. It's hard to say. Maryah's counts are still very low and she is unable to have visitors. It really is a time for rest right now. She is in need. I have brought her the laptop so she can update if she feels up to it and check her messages so keep em' comin!
Thanks everyone. You are an amazing source of strength for all of us! We'll keep you updated through the weekend.
Love and Blessings,
Rachel/Mama
Thursday, September 29, 2005 6:35 PM CDT
Good evening friends and family!
Rachel asked me to give a little update tonight. As of last evening, Maryah had a high fever (which seems to happen as a result of low counts and then blood transfusion), therefore ended up back at the hotel last night. Her leg has also been giving her some unbearable pain. She will be in overnight, and will be transported by ambulance tomorrow morning to the U of M. There, Dr.Thompson will review the "charts" and look at Maryah's leg himself, and determine what is going on.
Dr. Messinger was in this afternoon, and commented that it isn't as bad as he thought it might be. SO...with all that said, let us pray that it will be minor, and our girl can get home(and stay there) for a change.
As I mentioned, Maryah's blood counts are at rock bottom, which means no visitors at this time please. She is very susceptible to infection and we don't want to put our sweetie in danger. Rachel asked for us to hold phone calls as well...they are all in need of rest!
Thank you all for the constant prayers, thoughts, and willingness to help this family!! I know it means so much to each of them. If Rachel or Zachary are unable to update tomorrow...I will let you know as soon as I hear.
God Bless!!
Joanne (a.k.a. Auntie Jo)
Tuesday, September 27, 2005 11:07 AM CDT
Hi! This is Megan Barrett-Martin doing the journal entry for today!! I have some very important information to pass a long to everyone! Please read the past journal entry to see how Maryah is doing...she needs some extra prayers right now! However, as we all already know, she is one STRONG girl thanks to all of the support she receives from all of you...a lot of people have been asking on how they can help....so, we've come up with a way to help!! Myself and a few wonderful parents from IHM-St. Luke's are very excited to invite you to:
"Maryah's Mission-A Spaghetti Dinner Fundraiser for Maryah Tift and her Family" will be held on Thursday, October 27th from 4-8 p.m. at IHM-St. Luke's School!! (1065 Summit Ave., St. Paul, MN)
We will also be having a raffle to give away some prizes!! The cost for a plate is $10.00 - $100.00. You can choose on how much you want to donate!! Look for some more information coming soon...very soon. You can also contact Megan Barrett-Martin with any questions..651-634-4630.
This is Auntie Jo...adding a tidbit!!
Those of you who are available this Saturday, Rachel is getting a new roof. They are also needing to remove the old one as well. Unfortunately, a few of the people(including myself),who thought they would be available, have other committments on that day. They are looking for a couple strong pairs of hands to help. Please try to attend if possible!!! Go to the link below...Maryah's Fundraising Site, to contact Bryan or Elaine. Thanks so much!!
Monday, September 26, 2005 5:08 PM CDT
Hi there. We are here at home resting comfortably. Maryah has had a very long weekend. Maryah has been very nauseated and pukey this weekend. She has also been feeling some severe pain in her right lower leg. We went for xrays and CT this morning. They showed NO new bone lesions and minimal fluid around the knee prosthetic. We are sending the films over to Dr. Thompson at the UofM to review. They think her prosthetic may be loose in the Tib/Fib area where it is adhered. If Dr. Thompson sees that it is it would require a surgical repair so we will wait to hear from him. He is out of his office until tomorrow. Also, as if this isn't enough to handle for the day...Maryah's counts have hit the toilet already. We normally start to drop around Wed/Thursday but as of today she is nuetropenic and needs to be "quarantined" at home. She will go in again on Wed for counts and since her Hemoglobin is already as low as it is today she will probably require a transfusion by then. Maryah is in a lot of pain today so we are just laying low. She will not be able to get back to school this week but hopefully next week will prove to be better. Let's pray!
Maryah is really wishing she could be on the computer and do her own journal entries (she knows you get sick of hearing from MOM...ugh...and would rather hear from her). She will be "up" and ready to journal in no time. So as she is doing you all keep the faith and thank you for stopping by!
Love and Blessings,
Rachel/Mama
P.S. Please remember to always identify yourself when leaving guestbook entries. This is for safety reasons and we would hate to have to password lock this site. Thank you for your understanding. Rachel
Friday, September 23, 2005 9:49 AM CDT
Good Morning!!!
It's a big day today. Things are still looking good to get out of here. Maryah had some irregularities with the heart again this morning but the Cardiologist seems set that she will be able to go home with the monitor. We are 1/2 way through chemo right now and waiting for the Docs to come around on rounds to sign discharge papers.
Now that we got that info aside the fun news we have is that Maryah was sprung from the hospital last night on a pass because her friends at the Oncology clinic gave her four tickets to the WILD vs.Blackhawks game. Maryah's first ever hockey game. Dad, Mo, Ma and Ry all went to the game and get this....we sat a few rows up behind the players box! It was up close and personal! Maryah is now clearly hooked on hockey...that's my girl! I thought we should maybe leave early so she didn't get worn out but she INSISTED that we stay and watch 'till the very end. The excitement was great and we loved every minute of a very good game. We got her back to the hotel at about 10:15 and then Mo and I went home to try and get some rest, poor thing had school today!
I loved the whole thing! Watching Maryah with that beautiful smile and excitement on her face, completely engrossed in the game (instead of everything else going on) was priceless.
We hope that you have a great weekend and we will update you if anything changes today. Otherwise...WE'RE OUT OF HERE!!!!
Love and Blessings,
Rachel/Mama
Thursday, September 22, 2005 10:08 AM CDT
Good Morning!
We are sitting at the "Hotel 4200" enjoying a cozy blanket and good movie on this gloomy day. It's only gloomy outside though because Miss M GETS TO GO HOME TOMORROW!!!!! YEEEHAAAAWWWW!!! We are so very exicited we can hardly stand it!
Maryah had another ECHO this morning and the Cardiologist was so delighted at how normal it was that he had to come up to her room and tell us instead of calling me on the phone. Her ejection fraction came back up from 45% to 64% and her ECHO showed that everything else looks good.
Chemo is going well and tomorrow the little pumpkin is finally being sprung! She is well overdue for her trip to Auntie Jo Jo's house and cannot wait to get out there for some of Uncle James' famous popcorn! It will be nice to hang out and do the "normal" stuff like sleeping in our own beds! Fantastic!
Well, needless to say the news today has been all around great. Thank you for keeping up with us and for all the messages. We are really enjoying new messages everytime we log on. It keeps our spirits up! Looking forward to updating tomorrow morning while we are getting ready to leave. Your prayers are coming through loud and clear.
Love and Blessings,
Rachel/Mama
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Hey!!
It's maryah!!!! I am sooooooooooo happy I get to go home tomorrow!!!! awesome!!!! I just wanted to write a quick little note to say hi and tell you how excited I am. well I am going to go celabrate all the good news. Love to everyone. God Bless!!!!!!!!!!!!!
Maryah
Tuesday, September 20, 2005 5:53 PM CDT
Hello friends and family,
Today is day two of the second round of chemo. Maryah has faired pretty well with a bout of nausea and vomiting earlier and some more nausea now. The nurse has just given some medication to help her sleep through this. Maryah feels sad when she gets sick and it makes it harder to bare the whole big picture. It doesn't last long as her smile and good nature overcome her sadness most always. It makes me very proud to watch over her now and recognize just how much my little girl has turned into a fabulous young lady with spirit, grace and the ability to touch others. I watch her with her fantastic group of girlfriends from school and elsewhere and couldn't be more amazed by the amount of love and laughter shared between such young souls. Megan and Maryah organized a party at the hotel last night (thanks Meg for another fantastic surprise-she loved it) and it was a riot. Some of Maryah's close friends from school were sitting on the bed (which was jacked up practically to the ceiling). When I entered the room they all said, relieved "We're so glad you're here, we've ordered pizzas and we need money!" Good thing I got there when I did because the delivery came about five minutes later! It was really quite funny and I was humbled by how much these girls all love and long to be with Maryah when she is going through tough times. So, my message to Maddie, Maria, Sophia, Sarah H., Lucy, Jordynn, Allie, and all the rest of Maryah's dear friends at IHM-St.Lukes and outside of school as well is "THANK YOU". You are special to us, especially to Maryah and I love you all! Graceful, smart, kind hearted girls that you are, you are certain to go far in this great big world and your HUGE hearts will be your ticket anywhere you choose to go. There are so many that give endlessly gifts of time, compassion, listening ears, love and support I am deeply humbled by your willingness to help our family. Thank you, thank you and than you again.
We are trying to lock the docs down to releasing Maryah on Friday. The Cardiologist is putting some pieces of the puzzle together but they are still feeling as though the high dose Cytoxin could be the cause of the heart irregularities. He is determined to have answers very soon and a plan before Friday so that Maryah can be "sprung" from the hotel.
We will continue to keep you updated! Thank you for the messages...we are checking them lots during the day and look forward to hearing from all of you!
Love and Blessings,
Rachel/Mama
Monday, September 19, 2005 12:53 AM CDT
Hello family,
Maryah is starting the next round of chemo today. She is still experiencing heart "vibrations" and so the doc's are keeping a close eye on her. She will still have chemo (five days worth) and this means she'll have to be in the hospital all week. They do not know for sure what is causing her heart to 1) skip beats, and 2) pump less blood than it did one month ago, but they think it may be linked to the high dose of cyclophosphamide (chemo) she had three weeks ago. She'll have a much lower dose of cyclophsphomide with a mix of topotecan this week. They will monitor her heart and so they may be able to narrow the cause of the vibrations to the cyclo. We are glad they are watching her closely. We met with the radiologist this morning - after her daily 7:30am radiation treatment - and she reassured us her heart is not affected by the radiation. Maryah's faith is strong and her spirits are high. We will continue to keep you posted as we learn more. Peace and blessings...
LOVESTRONG,
Zach/Daddy
Monday, September 19, 2005 12:53 AM CDT
Hello family,
Maryah is starting the next round of chemo today. She is still experiencing heart "vibrations" and so the doc's are keeping a close eye on her. She will still have chemo (five days worth) and this means she'll have to be in the hospital all week. They do not know for sure what is causing her heart to 1) skip beats, and 2) pump less blood than it did one month ago, but they think it may be linked to the high dose of cyclophosphamide (chemo) she had three weeks ago. She'll have a much lower dose of cyclophsphomide with a mix of topotecan this week. They will monitor her heart and so they may be able to narrow the cause of the vibrations to the cyclo. We are glad they are watching her closely. We met with the radiologist this morning - after her daily 7:30am radiation treatment - and she reassured us her heart is not affected by the radiation. Maryah's faith is strong and her spirits are high. We will continue to keep you posted as we learn more. Peace and blessings...
LOVESTRONG,
Zach/Daddy
Monday, September 19, 2005 12:29 AM CDT
Hi there!
So here we are on Monday and the news is.....are you ready? She is staying at "hotel 4200" until Friday or Saturday!!!! UGH!!! Big let down huh? She's still got a smile on though. They are going ahead with chemo today and they want to monitor her heart through the week since we are introducing the Topotecan today (new chemo agent). Maryah's spirits are great and she is happy (atleast she sounds happy when I talk to her). Unfortunately I am at work today but will be heading down to the hospital soon. Can't wait to see her. So, stop by often, leave messages to give Miss M something fun to do. She checks her website a lot during the day! We'll keep you udated and I'm sure my little pumpkin will journal later today! Enjoy the day!
Love and Blessings,
Rachel/Mama
Saturday, September 17, 2005 3:22 PM CDT
Hello!!
Maryah here. How's everyone's weekend going so far?? Today the Cardiologist came in and said that They still want to montor my heart so they are going to keep me in the hospital at least intil monday. I am bumbed out that I have to stay but like my ma alway's say's "never mess around with the heart". The good part about it all is I am going to have a movie night with nikki and justin in about five min or so, so I am going to go clean up but I will write agian tomorrow. All my love. God bless.
Maryah
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Sunday Morning...
We are still here at the "hotel 4200" and don't expect to be checking out for another day or so. They are still monitoring the irregularities in Maryah's heart rythyms. They just came in to do another chest x-ray. They have also done an ECHO and EKG. The Cardiologist should be stopping in to talk to us more very soon. I'll update when/if I know any more about this current state of affairs.
We spent last evening watching movies and having Chinese food with Nikki and Justin. That was fun. Maryah and I continued into the night with our crocheting projects. Maryah is making the worlds longest single stitch chain. It's pretty long! Well we are off to another fun and exciting day!!! Hope everyone is enjoying the weekend!
Love and Blessings,
Rachel/Mama
Friday, September 16, 2005 3:42 PM CDT
Good Afternoon,
We just finally got our hands on a laptop to update you. Maryah went for her final day of stem cell collection yesterday at the UofM (not sure the total number yet). After collection we needed to do a transfusion since hemoglobin was creeping down. We went home, got her started on her IV meds and choked down a couple bites of supper then she "fell", she was not feeling well and started with a temp of 100.9 and then 10 minutes later 102.9. We took off for the emergency room where they admitted us back to our favorite room here in the 4200 hotel. They gave her a different antibiotic, took some blood cultures and monitored her over night. Dr. Moertel came in this morning and gave us the okay to go home. In the mean time the Cardiologist had different plans. He reviewed her Holter monitor she was wearing over the past 24 hours and found some arrithmea so he wants her to stay put here at the hospital for atleast another 24 hours. So Maryah shed a few tears, said a few choice words (which I will only allow in "special" circumstances to release anger) and then decided that we will just make the best out of it. So we are currently planning some craft projects, Friday night pizza and movies with Dad and Mo and some good ol' fasioned fun, even while cooped up!
We have to check counts on Monday but the plan is to start chemo on Monday and it will run each day (Mon-Fri) for about 2 hours.
Sorry it took so long to get word out. I hope everyone has a fabulous weekend and we'll keep you updated as things go along.
Love and Blessings,
Rachel/Mama
Thursday, September 15, 2005 7:38 AM CDT
Dear Family and Friends,
I apologize up front for pre-empting Rachel's Sept.14th note so be sure to return to the previous Journal Entry to learn about Maryah and what happened yesterday and what's going on today.
So many of you have asked numerous times "How can I help","Can I bring a meal?","Can I mow the lawn?", "What can I do to help Rachel and Zach through this journey?"The short answer to your questions is "YES,there are ways for you to help". There are needs now and there are likely to be more needs both tangible and financial in the several months to come. A second website has been created to let you know ways of helping. It is our intention to relieve some of the stressors for Rachel and Zach by creating this second information line. Miss M,Rachel and Zach can keep up the day to day journaling and keep their focus on her (and Morgan,can't forget Mo!)and we'll keep the second line of communication going. As needs arise, we'll let you know. There is a link at the bottom of this journal or simply go to www.Maryah.net.
Thank you for your heartfelt love that surrounds this family. Blessings on this day.Elaine(Nuna) and Bryan
Wednesday, September 14, 2005 10:13 PM CDT
I am honestly about to fall asleep sitting up so this will be short and sweet. Maryah has had another long day and we have collected as of yesterday only 1.43 dose of stem cells however we have now learned that 1 is the bare minimum for this protocol Maryah is on. We have enough but we have decided to run one more day tomorrow...keep thinking STEM CELLS...come on STEM CELLS!!!! Maryah had some difficulty late in the afternoon with some irregular heart rates so she will be wearing a heart monitor for a couple of days to be certain all is working as it should be. EKG was normal, electolytes normal and chest x-ray shows her line is not placed to close to the ventrical that it would cause a problem. One thing after the next, we will just keep rolling through it though. Maryah got to end her day by going to her first dance class of the season. Mo had her first dance class also. Maryah rested for the first part of hers and tapped her heart out in the second part. She is sound asleep and exhausted but she went to bed with a smile and said sweetly..."I love to dance Mom"...she's danced her way into many hearts and I will hope and pray that she will always dance! As the song goes "When you get a chance to sit it out or dance, I hope you dance."
Off to bed for Mom too...sleep well, sweet dreams and we'll update again tomorrow.
Love and Blessings,
Rachel/Mama
Tuesday, September 13, 2005 8:40 PM CDT
Good Evening,
Finally a moment of peace and quiet. The girls are in bed already. I hear Morgan singing but Maryah is fast asleep, worn out from two LONG days! We were at the UofM again until about 3:00 or so and we are hoping that they got many more stem cells than yesterday. They are trying to get a dose of 10 (not sure what exactly that means) but they only got .83 yesterday. So we sat and talked and wished the stem cells out today! Maybe a little dance, shaking around, something is bound to work right? So we will find out in the a.m. how many they collected today.
Maryah is generally feeling good and ready to get on with next week's chemo round #2. She may even be able to make it to school this week for a day or two dependent upon how the rest of the collection goes. We'll see.
So prayers for lots and lots of those beautiful stem cells and for a day or two at school!
Nuna came along to the collection today and we again saw the finished product and she referred to it as a "bag of gold". She is right! It is pure gold in that little tiny bag! It is what will rejuvenate our beautiful young lady after very high doses of chemo therapy.
There is a lot of information to take in and process. Zachary and I are working on a final decision about the High Dose Therapy, if we will or wont do it and what will we do if we don't use HDT? We simply want to do the best thing for Maryah and get her well and on her way to a happy and healthy future. That is my most diligent prayer.
We are forever grateful for the support and love we receive from family and friends throughout this, I know I've said that a number of times but I don't think I can say it enough!
I am so proud of the lovely friends Maryah has made at IHM-St.Luke's. Sophie, Sarah, Maddie as well as many others including long time friend Sara D. have been a constant source of joy and support for Maryah. In fact Maryah's classmates C.J. and Maria have offered to collect money for Maryah for the Catholic Schools Marathon this year. They are working on it now, I just received a phone call from C.J.'s Mom who said that the kids at school want to do something to support Maryah and to make sure she knows they are there for her. Incredible children, thoughtful, kind and loving. It is such a blessing when your children have good friends. I honestly haven't thought much about school and the current social events that come up and so for the kids and other Moms/Dads to think about our family and take over some of those things... I never even thought about it and I am touched that they are willing to do it. I know Maryah will be too when I tell her in the morning.
Well, time for Mom to have some R&R now. We'll update again tomorrow.
Love and Blessings,
Rachel/Mama
Monday, September 12, 2005 6:20 PM CDT
Good Evening!
We got done at the UofM about 4pm today. We got a very late start because they wanted to check and make sure that with Maryah's recent positive blood cultures that things would be a "go" today. So once they got started the darn blood wouldn't come out fast enough so the silly machine kept dinging. What a pain. Hopefully tomorrow will be a little more smooth (not that it was terrible today)! Today they collected for about 5 hours and tomorrow will be the same. It is such an interesting process and we got to see the bag of stem cells...very cool! Technology is amazing.
Maryah's feeling a bit tired but overall pretty good. We are still doing IV antibiotics, since Maryah is allergic to the antibiotic she needs to have Benedryl as a pre-med and it puts her right to sleep!
Next week begins a new round of chemo, however it will be outpatient and just a couple hours each day at the clinic.
Thanks for all the continued words of encouragement. They are extremely helpful for Maryah.
Love and Blessings,
Rachel/Mama
P.S. Maryah wants me to tell you that she will update as soon as she's feeling up to it. Sorry you have to keep hearing from dull ol' Mom :)
Saturday, September 10, 2005 3:05 PM CDT
Well, we're finally home. Maryah got to leave the "hotel" this afternoon around 1:30. She is fresh out of the shower and resting comfortably. She won't be bothered again until home care comes out to teach us how to use these new IV pumps. She'll have to continue on IV Antibiotics and G-CSF (White Blood Cell Booster) at home. New pumps, new stuff...all so much fun!
Maryah is feeling a little sad and we shared a few more tears as we watched her hair washing down the drain in the shower. She has decided it's time to shave it off. So tonight will be the ceremonial shaving. I wish we didn't have to say goodbye to that beautiful hair again but I am so thankful that Maryah's bravery keeps her going. I think today I am more sad than usual because as much as we want to protect our kids we can't always take away all the fear and pain. So get ready again for that beautiful bald head! This time we'll get to get a good look at her incision from the surgery. We're all pretty excited to get a clear look since it's been so difficult to see amongst all of the hair.
So the BEST part of today was when Megan and Allie put up a HUGE sign on the gate along 35E across from Maryah's hospital window that says "MARYAH TIFT, WE LOVE YOU, KEEP FIGHTING!!!!". So if you happen to be driving on 35E near the hospital look up at the black fence. There is a red heart baloon attatched to the sign. THANKS A TON YOU GUYS!!! What a great way to make Miss M feel special. She LOVED it!
Harvesting will start Monday morning at the UofM. We'll keep you updated. Rest, relax and enjoy your family and loved ones today and everyday!
Love and Blessings,
Rachel/Mama
P.S. Mom is SO lame...Dianne helped put up the sign too!!! By the way I'M BALD!!!!! Mom and Dad videotaped the "ceremony" and tell me I look beautiful...I'm glad it's gone!
Friday, September 9, 2005 4:22 PM CDT
Well, now this is interesting...two journal entries in one day! Just wanted to get an update out from today.
We are FINALLY back in Maryah's room. We left it this morning at 7:25 for radiation, went to the PET scan where Maryah was cooped up on the table for 2 1/2 hours. Since the PET went so long we had to go directly to surgery after and in she went! They have now placed the new line and removed the infected line. The Doctor decided it would be best to put the line in a different location on her chest and run it through her jugular this time to avoid the chance of it being infected. The line looks good and is working just fine. Maryah is having a lot of pain in her neck muscles around the jugular where they threaded it in. They also completed the spinal tap (results still pending). They wanted to have that done to rule out any cancer cells lingering in the spinal fluid. As usual all of the docs and nurses were great and aside from all the running around it's been a pretty uneventful day. Maryah's temp is slowly going down yet today and it seems the infection is coming under control. The blood cultures they took yesterday remain negative today and that is a good sign.
I don't quite know how this precious daughter of mine keeps going with a smile on her face through most of it! Grace under pressure with only a few tears here and there when we are feeling scared. I'm not sure it's strength we possess but a strong faith that we are cared for and loved by a much higher power. The circle of family and friends that have enveloped us keeps us from getting scared and sad on so many occassions...I must tell you that as I have said before there is simply no way to express my gratitude. I am simply humbled by each of you that care so deeply. You bring immense joy. With that I close by saying remember that you are loved as well and never forgotten during quiet times of reflection and prayer.
We will be here through the weekend and will update as we can.
Our deepest gratitude, love and blessings,
Rachel/Mama
Zachary/Dad
Morgan/Sissy and of course
Maryah McGee/precious daughter, sister, granddaughter, niece, cousin, friend and your Safari Guide
P.S. Spinal Tap is NEGATIVE WOOOOOHOOOOO!!!!!!
Friday, September 9, 2005 6:59 AM CDT
Good Morning!
Maryah and I are just getting up and ready for our day. Although she's pretty tired and not really willing to get up as quickly, she's got a bit of extra time though.
Today will be a busy day with more of the rollercoaster ride we've been experiencing since Tuesday.
Maryah is still running a low grade temp even after days of antibiotics but it is slowly coming down. The surgeons convene every morning to determine if they/we are comfortable with a surgical procedure while Maryah is in this current state. The plan as it stands this morning is for Maryah to have radiation in about 20 minutes, PET Scan at 8am and then the new Hickman and Spinal Tap at 12:45 today. The surgeons will re-evaluate this morning and decide regarding the surgury some time while we are next door for tests.
Overall Maryah is feeling pretty tired and down right sick and tired of being held up in this hospital room. I know she really would enjoy visitors but Zach and I have decided along with the Docs that it really is best to keep her isolated as much as possible to avoid further infection/germ spread.
It is my belief that we will be here the rest of the weekend at minimum.
Morgan thoroughly enjoyed her first day of school yesterday. We videotaped her getting on the school bus in the morning. She was typical spark Morgan and got on the bus with no fear and a HUGE smile. She came later to the hospital to tell her Sissy about the day and how much fun she had. She was very excited to go back today and even excited for homework?!?! She has so much pinache, gotta love these girls and their social spark! Makes a Mama proud.
Well, we had better get rolling over to radiation, the walk is a little longer when we have to bring our "friend", the IV pumps along.
Have a WONDERFUL weekend!
Love and Blessings,
Rachel/Mama
Wednesday, September 7, 2005 1:06 PM CDT
Good Afternoon! Hope you enjoy the new homepage picture. Compliments of Ron Burg at Ron Burg Photography (he took our family portraits). You can go to his webpage at the link below. He has posted a picture of Ry on his website as well (I believe under Siblings).
We visited the UofM today to talk with the transplant team and prepare for the stem cell harvesting. They gave Maryah a "pass" to leave the hospital just for the appointment. Of course we made a pit stop to Ben and Jerry's for some ice cream on the way back.
Unfortunately making some changes in our planning requires Maryah to have a different type of Hickman line placed. She currently has a single Lumen Hickman and she will need to have a double Lumen Hickman for the harvesting to be done. She will have the line inserted on Friday here at Children's and if her counts come up as necessary she will begin stem cell harvesting on Monday at the UofM. This procedure takes about three days at six hours each day. No real side effects occur from this process and it will be good to be done with it.
I will be taking a full leave from work for the remainder of this week and next to help attend to all of these appointments and procedures.
So Maryah just got comfy in her hospital bed again after giving her a shower and washing her jammies. She's smiling and prepared as usual (thank goodness for her positive attitude).
We hope everyone is well and having a FANTASTIC day!!!
Love and Blessings,
Rachel/Mama
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Morgan's first day of school is tomorrow! Morgan and I went to meet with her teacher and she told Ms. K how excited she is for school to begin. She is a BIG girl and she said she's ready to do homework. Mo has plans to attend "Harvard" someday. She was shocked to learn that her new school was NOT Harvard, so I explained that is where she'll go to school when she is big and she was fine with that.
Through all of this Morgan keeps Maryah and the rest of us laughing. Sometimes people ask if Mo gets kind of lost in the daily shuffle of everything that goes on and the short answer is "No". Her ability to keep on truckin' is amazing. Her outlook on life is similar to Maryah's. Though their personalities are unique to the other, they both roll with the punches, dust themselves off, say their prayers, then continue on. Mo absoultely adores her big sister. Maryah said this morning that she probably could not do this (the way she's been doing this) without her sister. Mo helps us get through these hard times -she has some great one liners...like a few nights ago I grabbed the guitar and started playing. Seemingly frustrated and annoyed with that sound Mo immediately stood up, said "I'm not listening to this" in a matter-of-fact tone, went to her room and closed the door. We do not know why she did that but Maryah and I laughed hard anyway.
Also, while we were at Sabelita's school Rachel called to inform me that Maryah has an infection in her Hickman line so it's a good thing she is having it replaced soon. The doc's also ordered a full PET scan and a spinal tap. They'll do the spinal tap when she's under for her new Hickman line. As always, we'll keep you updated as we learn new pathways on our Safari.
Love, peace, comfort, grace and blessings...
Zach/Dad
Hello!
Maryah here! It's my sissy's first day of school today. Yeah Morgan! I am so proud of her. She is very, very excited. I called her this morning at my Dad's house and they were eating pancakes for her first day of preschool. She is very excited that she is becoming such a big girl. What would I do without a crazy little thing like Mozy. I love her to pieces. On my first day of school my Mom got us Dairy Queen so after school and dinner we are going to get Dairy Queen for her first day too. We were planning on having the procedure for the Hickman replacement to be on Friday but then they switched it around to today. Now we are waiting to see if they can do it today because of my infection and because of my fever. I really have no idea what's going on... can't you tell? Well I am going to go sleep. All my love. God Bless.
Maryah
Tuesday, September 6, 2005 11:50 AM CDT
Good Morning....or I guess it's almost noon now. Last night turned into a long night of up and down for Maryah. She was developing a fever through the night and had the chills most of the night. When we woke up for radiation her fever was up to 101.7. Ry went through her radiation treatment and then Dr.Farniak ordered a CT for the lump on the back of her head. We had the CT (no report back yet) and then went up to clinic where Dr. Messinger admitted her to the floor with a fever of 102.8. She will likely be here a couple of days or better getting antibiotics. Her blood counts dropped to nothing...she essentially has no blood count and therefore her body can't fight off any infection. So here we are at our home away from home and getting comfortable in our room. Grandma is bringing salads for lunch and we are going to watch a movie. So what was a great weekend landed us right back in the hospital. We will update again when the CT results come back and Maryah feels up to typing a few words. Hope everyone is having a fabulous day!
Love and Blessings,
Rachel/Mama
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Hello !!!!!!!!
Maryah here. I just got the results of the CT and they were negative. SWEET!!!!! Right now I am watching The Pacifier. It's a great movie. This is my second time watching it. I would recommend it. My Nuna just came down here to the hospital and brought my Mom and Dad lunch. Thanks Nuna. She's also going to bring me mashed potatos and gravy for dinner. My favorite! mmm! Well I am going to go rest. All my love. God Bless!
Maryah
*** Just a note that Maryah unfortunately cannot have visitors at the hospital. She is under strict precautions due to her extremely low blood counts. Sorry to all those who have requested!
Tuesday, September 6, 2005 11:50 AM CDT
Good Morning....or I guess it's almost noon now. Last night turned into a long night of up and down for Maryah. She was developing a fever through the night and had the chills most of the night. When we woke up for radiation her fever was up to 101.7. Ry went through her radiation treatment and then Dr.Farniak ordered a CT for the lump on the back of her head. We had the CT (no report back yet) and then went up to clinic where Dr. Messinger admitted her to the floor with a fever of 102.8. She will likely be here a couple of days or better getting antibiotics. Her blood counts dropped to nothing...she essentially has no blood count and therefore her body can't fight off any infection. So here we are at our home away from home and getting comfortable in our room. Grandma is bringing salads for lunch and we are going to watch a movie. So what was a great weekend landed us right back in the hospital. We will update again when the CT results come back and Maryah feels up to typing a few words. Hope everyone is having a fabulous day!
Love and Blessings,
Rachel/Mama
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Hello !!!!!!!!
Maryah here. I just got the results of the CT and they were negative. SWEET!!!!! Right now I am watching The Pacifier. It's a great movie. This is my second time watching it. I would recommend it. My Nuna just came down here to the hospital and brought my Mom and Dad lunch. Thanks Nuna. She's also going to bring me mashed potatos and gravy for dinner. My favorite! mmm! Well I am going to go rest. All my love. God Bless!
Maryah
*** Just a note that Maryah unfortunately cannot have visitors at the hospital. She is under strict precautions due to her extremely low blood counts. Sorry to all those who have requested!
Monday, September 5, 2005 9:05 AM CDT
Good Morning!
Today we are off to visit Uncle Greg and Auntie Kim, Kaitlyn and Arielle. We will spend some time with them while we have this nice long weekend. Maryah missed school on Friday because she woke up with a stomach ache but by mid morning she was just fine. Blood counts came back completely normal on Friday afternoon (surprisingly). Maryah has felt great all weekend. On Saturday she danced her fanny off at Krista and Tony's wedding. She had a blast well into the night.
We are "off" from radiation today but back to it tomorrow. Maryah has another painful "spot" on the back of her head that came about yesterday. I have called and talked to Dr. Slomiany already and requested a CT scan for Tuesday after school. We will be praying that this "spot" is nothing at all. Of course I worry and panic over any lump, bump or bruise these days so we don't take any chances and check everything that comes about. It may just be a side effect of radiation. We'll keep you updated but please say your prayers.
We hope that everyone has had a beautiful holiday weekend and enjoyed an extra day of R&R.
Love and Blessings,
Rachel/Mama
P.S. Please say an extra prayer for my Uncle Roger (Dad's brother). He had major emergency surgery yesterday for a thorassic annurism repair and double bypass during the process. He is stable today but not out of the woods yet. Maryah and Roger have a really special bond!
P.S.S. I finally have my computer back and have posted some new pictures...check them out!
Wednesday, August 31, 2005 9:34 AM CDT
Good Morning!
Well, Maryah is off to her 1st day of 6th grade. She was discharged from the hospital early this morning, went to radiation and then off to school. Of course she wanted nothing to do with Mom and Dad kissing and hugging all over her! EMBARASSING!!! Maryah is running a slight temp so we will watch that. We figure we'd get her throught the first day of school and worst case scenario she would have to go back to the hospital for iv antibiotics if the fever doesn't come down. Let's pray it does! I am sure that Maryah will journal after her school day is over so you can expect to hear all the details straight from her mouth. Have a wonderful day!
Love and Blessings,
Rachel/Mama
Hello!!
Maryah here. I had an awesome day!! I got to see all my new friends, got my first locker, got all my stuff ready for this fun year. I am already having a blast in 6th grade and it was only my first day. We really didn't do any work today, we just got adjusted. This year we are going to be going from class to class but we do still have a home room and that is the room we will be spending the most time in. Today we just worried about staying in our home room and tomorrow we will worrie about meeting our other teacher's. I can't believe that summer is already over. It went by way way to fast. I really wish that I could have spent my last two day's of summer out of the hospital doing fun stuff rather than getting chemo but I think I will live. I have been looking forward to going back to school since the day we got out. Today I made a new friend. Her name is Krista. She is new to our school this year and was a little nervous so I hung out by her as much as I could. She is very friendly. Tonight I am going to go to bed early and wake up early, then go to radiation and off to school again. I am hoping I can make it a full day tomorrow at school just like today. All my love. God Bless.
Maryah
Tuesday, August 30, 2005 9:05 AM CDT
Good Morning! Another beautiful day outside. Unfortunately we will only be enjoying it from the hospital deck/balcony. Maryah will have to stay overnight one more night to monitor vitals, keep her hydrated and keep her from being nauseated. They will have discharge orders ready for the morning so she can go to radiation and then off to school. Nothing like last minute planning! I guess we need to get back into the swing of living minute to minute. We have watched "My Big Fat Greek Wedding" about 1500 times since she started chemo in January 2004 and I think if we watch it one more time I will lose my ever loving mind!!! I think it's time to read a good book!
We were hoping to hear that we could go home today and I know Maryah is bummed but she is still smiling and making the best of the situation. Seems that talking on the phone to Nikki is a great way to pass the time.
Maryah finished her chemo successfully yesterday with none of the risky side effects that were talked about. Today they are monitoring sodium and glucose levels that are a little off but coming around to normal quickly.
Last night Maryah and Dad had a "slumber party with movies and popcorn while Morgan and I went shopping for her school supplies. Morgan is very excited to be starting school and I can't quite believe she's old enough to be starting school. Time flies and babies grow up far too fast! Well, I am off to get Maryah some stuff from home so we can take a shower, have some lunch and prepare for the 1st day of school! Okay, I feel like I am writing a novel now so I will be signing off and letting my little sweet pea write a few words for herself. Enjoy the day!
Love and Blessings,
Rachel/Mama
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Hello!
Maryah here. I am still in the hospital. We had a little meeting with my doctor and he still wants to watch me so he wanted me to stay one more night. In the morning at 7:30 I will go right acorss the street to radiation and then to my first day of 6th grade. I am very excited that I am going back to school. I get to hang out with my friends and all that fun stuff. I love my new jounior high teacher. She is a crazy lady. Her name is Ms. Fisher. Today My ma and I are just going to hang out and we are about to to put a movie on so I am going to go do that. I hope that everyone has a good rest of the day. All my love. God Bless.
maryah
Monday, August 29, 2005 11:47 AM CDT
Hi Everyone!!
Maryah here. I am at the hospital. They are just about to start chemo. NOOOOOOOOOOOOO. The world is ending. Chemo just simply sucks. That would be my word of perspective. They are starting right right right... now. Exaclty at 12:05. BOO. Chemo is the worst thing you can ever taste. It's not spinach or liver and onions it's chemo. Well It's kickin in and I am starting to not feel the best so I am going to head out. Lots of love.
Maryah
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Good Afternoon! It's about 3:30pm and Maryah is 1/2 way through the chemo. It runs over a six hour period. Although we have been practicing positive thoughts she still has a yucky tummy. Can't be too bad though because she's eating the rice krispie bar I just gave her. The doctor came this morning to talk about the specific risks they monitor for when giving such a high dose of chemo. He also said that the risks are not very common. He also said that it is likely within 7-10 days she'll be back in the hospital when her blood counts begin to plummet due to the risk of infection, etc. Things are looking up for the start of school on Wednesday though.
Maryah is being a champ and she is taking well to what is usually a very difficult chemo. We are watching some movies and making bracelets while we wait for the time to pass...soon to be back in the comfort of home. Thanks for the messages, prayers, love and support.
Love and Blessings,
Mama/Rachel
Saturday, August 27, 2005 10:16 PM CDT
Hello!
Maryah Here. We are having a very fun but very late night at our friends house. The Johnson's are having a BBQ with a lot of my family and friends and it's a weekend so we can be up a little later than normal. It's alway's a little fun to stay up late. Today we had our family picture's. They are going to turn out great!! we all looked very nice. if we can when we get them back I will try and paist some on the site. Yesterday I went in for my first blood draw since I think I got my port out. Well I am going to go. All my love.
Maryah
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Tomorrow Maryah will have radiation in the early a.m. and then admit to Children's for inpatient chemotherapy. She will need to be inpatient for this 1st round only. It will be a very high dose of Cyclofosfomide(Cytoxin)that they use to prep her for the stem cell harvesting. They need to watch her while they administer such a high dose so that is the reason for inpatient treatment. We will be giving her the G-CSF injections for 10-14 days after to boost her blood cell production and boost stem cells from the "bow and marrow" (bone marrow) to harvest in 14 days. They will have to do the harvesting at the Minneapolis Children's hospital because that is where the transplant team is located. We should be going to meet that team very soon. We are starting the more difficult aspect of this journey tomorrow so I will be saying extra prayers that the strength Maryah has always shown will come forward ten fold now. Maryah is planning to join her 6th grade class for the start of school on Wednesday! She is certainly determined. Hope everyone is having a fantastic weekend and enjoying the beautiful weather we have.
Love and Blessings,
Mama/Rachel
Friday, August 26, 2005 8:43 AM CDT
Hello!
Maryah here. Happy Friday!! I am very excited the week is over and I get a couple days off of radiation for the weekend. This morning I am spending some special time with my Ma at her work. Then in a few hours or so we are both going to get our hair done at my Auntie Dray's salon. We are both looking forward to it. We had so much fun at the Saint's game!! The Martin family and my family tail gated. It was my frist time ever. It's so much fun!! We grilled hamburgers and we had fruit and chips and sodas. It was awesome. Then we went and watched the game. Allie, Morgan and I got called out on the field to do the chicken dance. It was a blast! Yesterday Mom and Dad took Allie, Morgan and I to the State Fair. We ate lots of yummy food and went on some rides. It was hot out but we had fun anyway!
Tonight is movie night with Mom and we will just rest after a long, long week. Tomorrow we are having our family pictures taken. That should be fun too. I start chemo on Monday and have to be in the hospital over night. Hopefully it won't be too hard. I think I'll be okay though! I hope everyone has a great weekend and lots of fun!!
God Bless,
Maryah/Ry
Wednesday, August 24, 2005 9:21 AM CDT
Good Morning!
Today we will begin radiation therapy. We are ready for the adventure and it is sure to be interesting. Maryah is really fired up and having a great morning.
A few weeks back my nieghboors were getting ready to leave for India. At one point a couple years back they had a beautiful Japanese Maple tree in their front yard. It was Maryah's favorite tree. During a recent trip to Conneticut the neighboors brought back two new Japanese Maple trees and gave one to their daughter and one to Maryah to plant in the back yard. During our "basement overhaul" on Sunday while everyone was at the house Zach began to dig up the spot for this baby tree, slowly each of us joined him in digging, planting and replacing the soil around the newly planted tree. Maryah and Morgan watered for awhile, we said some quiet prayers over our "new addition" and left it to grow grand and tall.
This morning as I was getting ready for work I asked the girls to go out and water the tree before we left. I walked by the kitchen window and stopped to listen to the conversation they were having with the tree...Maryah was watering and Morgan was bent over whispering "grow tree, grow". It was a lovely moment as a mother to understand that our beautiful daughters have learned what it means to nurture a life. Another blessing today to be thankful for.
The girls and I enjoyed Dr. Dolittle at the Ordway last night with Megan and Allie. It was a fabulous show and I think we would all recommend it. Tonight we are off to the Saints game for tailgating and a double header with the Martin clan. Should be fun!
Hope everyone has a FABULOUS day!
Love and Blessings,
Rachel/Mama
Tuesday, August 23, 2005 11:47 AM CDT
Hello!!
Today I am having a blast!!! I am at Angie's house right now and then in about 10 min my grandma is going to come to pick me up and drop my uncle and I off at the new Como amusement park. I can't wait!! My uncle Nate is SOOOOOOOOOOOO fun!! We are going to have a blast. We just got done eating my favorite lunch, lasagna. It was sooo good. Angie makes the best lasagna I have ever had. It's so good.thank you angie!!! I am feeling pretty good. I have been a little soar by my line but otherwise I am feeling great!!! Yesterday we called the clinic to see what the results were for the bow and marrow and they came back negative. I was super super happy. That just made my day hearing that. It was good to hear some good news. Well I am going to go. Hope everyone is having an awesome day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Maryah/ryah
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P.S. Creative kid hearing is fabulous isn't it...the bone marrow biopsy came back negative...cancer is nowhere else! Love you Ry!
MAMA
Sunday, August 21, 2005 8:33 PM CDT
Hello!
Today we cleaned out our basement, and got rid of a ton of junk! Then we had Savoy pizza....yummmmy!! After that we just kinda hung out. My Auntie Jo took me home with her, so I could sleep over. We've been eating M & M's and drinking ice tea.
I won't be starting Chemo until next Monday, but will start radiation this Thursday. Auntie and I needed fun time before all that starts. Shayna has been drawing lots of pictures for my wall...it will be full! Dorian and Uncle James have been racing their remote control cars all night!
I'm feeling good and hope everyone had a fabulous weekend!
God Bless!
Maryah
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Just as a quick rundown Maryah's chemo has been postponed until 8/29. This is due to the timing of the stem cell harvesting. Radiation will be a go either Wednesday or Thursday. I am working on the scheduling today. Maryah has had another FUN weekend and lots to do. It should be another good week before things really get rolling. We'll keep you updated. Thanks for stopping in!
Love and Blessings,
Mama/Rachel
Thursday, August 18, 2005 9:16 PM CDT
Hello Family,
As you know Maryah had a Hickman line put in and a bone marrow aspiration. She is doing great and resting well at home. They will call us tomorrow with results. We are confident it has not spread to her marrow. She will have radiation on Thursday of next week, and then start chemo on August 29th. She is still planning on going to the first day of school (on August 31st). Thank you Nuna and Bryan for tonight's dinner. Maryah had a good appetite and loved the mashed potatoes and gravy.
From time to time Maryah and I walk through some visuals that help to get her through trying times. This morning, on the way to the hospital, we went through four "safaris". The first was "boxing"; the one we used last year...we are building on what we know. I told her if anyone else could fight this for her she would have many people step forward, but since that cannot happen she can rest assured she will be the last one standing. Rachel and I tag-team as her "Ringman" and Morgan is her "Cut-man" though she hasn't had to do that yet. Every round of chemo (and whatever else she is doing) is just another round in the ring. She is well-trained and prepared and with the cheers from the crowd (all of you) she will win the championship bout! Side note: today when I parked the car in the ramp of the hospital I went around to open the door for her and when she got out I started yelling "The champ is here!...the champ is here!" like Ali used to do. Sound carries in the ramp so she told me to quiet down. I listened to "the champ".
The second visual we went through was of her riding a bull. I thought this was good timing since she was wearing her cow-girl hat. I told her to not be afraid, that the bull was going to try to throw her, but to hang on and have fun. I also told her to ride this bull until the bull was tired. A few hours after the surgery Maryah told me "the bull is tired, Dad".
The third visual is a line from an old Jim Morrison song, "she dances in a ring of fire yet throws off the challenge with a shrug". If you've ever seen her dance...
The last one was of surfing; of feeling the wave - seemingly a wave the Great Spirit made just for you - beginning to swell up behind you as you paddle forward. Then, while staying low to the board, you push yourself to up to a standing position to feel the graceful energy of the ocean guide you inward towards land where you know you are safe...and as the wave goes back out to join the other waves you nod with gratitude, humility, and awe as if to say "I'll ride you again one day if you're lucky" even though you don't believe in luck. To Cousin Rob (who lives in California with his wife Christine), Maryah told me after surgery "we need to go to California" so you're the one in the family who has to teach us how to surf, but we'll give you some time to welcome your baby boy into the world. Congratulations you two!
As for the visuals they seem to work, maybe more for me than for her. But I figure they can't hurt so if you know of any good ones please walk her through them. They are good for the spirit.
On a final note, sometimes the waiting gives way to tears, however, we again reminded ourselves today many people around the globe believe tears are the purest form of prayer. She/we got them out, said a few quiet prayers then kept on keepin' on. The nurses came to get her and she stood up, looked focused, walked into the surgery room, laid down, said "love you", then drifted off to sleep...now I hope we all sleep as good as she did. See you in the morning.
Dad/Zach
~~~~NEW PHOTOS~~~~
Thursday, August 18, 2005 7:23 AM CDT
Good Morning,
Another lovely morning with promises of rain showers which we so desperately need, at least for our dry lawn.
Maryah will go in for her surgery today. She is having her Hickman line put in and then bone marrow aspiration. Both procedures shouldn't take but an hour or so. It is all outpatient surgery so I would expect Maryah to be home and resting comfortably by late this afternoon.
There will be NO radiation therapy tomorrow. It will not begin until next Thursday. They need more time to determine her measurements, physics and dosages. Chemo is still on for Monday morning.
They did a new CT for radiation measurements yesterday and Dr. Slo wrote an order for the radiologist to look at the "something" they saw on the previous CT. The neuro radiologist had mentioned he thought it was simply post-operative residule/hematoma. The only way to know for sure is if this "something" had grown. We would be able to see that from yesterday's CT. I haven't heard any differently at this point but I will check the results with Dr. Slo this afternoon while we are at the hospital.
I am sorry the pictures haven't been updated yet, my home computer is on the blink so I haven't had a chance (in all my copius free time). I will get them updated very soon!
So, lots more to do but we're "gettin' r' done" as Uncle James would say!
Love and Blessings,
Rachel/Mama
(SOME NEW PHOTOS ADDED...by Auntie Jo
Rachel can put different ones in soon!!)
Tuesday, August 16, 2005 4:52 PM CDT
Back again for the 2nd entry of the day! And...the results are in....are you ready?
Wednesday: Radiation Simulation and CT for radiation measurements. Appointments in the a.m. and afternoon.
Thursday: Surgery to insert the Hickman line and then bone marrow aspiration - 12:45 at Childrens
Friday: First round of radiation
Monday: First day of chemo (round one)
So we are at the gates and about to start the race...stay prayed up we bet on the winner and her name is Maryah Therese!
Love and Blessings,
Rachel/Mama
Tuesday, August 16, 2005 8:32 AM CDT
Good Morning,
I have just enough time before my morning meeting to get an update in...I think! Here goes:
Yesterday Maryah got the okay from Dr. Pastrami's Nurse Prac. to go ahead with chemo. Maryah's incision has healed beautifully.
Then it was off to Dr. Salami and where we have determined that through the head CT there is a 1.1 cm perfectly round "something" right where the tumor was removed. This "something" could very well be the gel that Dr. Pastrami used when stopping the bleeding during surgery a few weeks ago. It will be determined when Dr. P looks at the CT for himself.
Not to worry this may just be a minor bump in the road (nothing we haven't dealt with before). If it is another tumor that has developed they will have to go back in and remove it before we start treatment (another two weeks of recovery). We would start radiation immediately after surgery however just wait on chemo.
Zach, Dr. Slo and I have decided that we will do four chemo agents Cyclofosfomide/Topotecan one round and the next round will be Etoposide/Ifosfamide for about 4-6 rounds every 21 days (each round is five days long). We will do radiation at the same time we do chemo for six weeks (approx). There will be more decisions down the road but that is how we will begin.
Maryah will have her radiation simulation done this week so she can begin ASAP (maybe even the end of this week) and then she will have a Hickman line inserted one day this week. While she is under for the line insertion they will aspirate bone marrow to check it is "clean" from cancer cells. This is an outpatient procedure and only takes part of an afternoon if all goes well.
If it is determined the "something" in her head is not a tumor regrowth we will begin chemo on Monday in hopes Maryah will be able to feel well enough to start her 6th grade class for the first day of school!! YAYY!!!
So, I know this is a lot of info in a tight little journal entry but know that I will give more details as we go. It will be another busy week. Please pray for strength for Maryah, clarity for Zach and I as well as the Docs that are treating her. Thanks to those who are praying for peace and sleep because we are finally getting some! Yay for small miracles.
We love you all and thank you all for being here on our Safari!
Love and Blessings,
Rachel/Mama
Monday, August 15, 2005 8:34 AM CDT
Hi there!
Mom and Maryah here! We are at work today. Maryah and I are both wearing our matching business outfits and will be here for a bit today to get some work done before the real work begins...Dr. appointments....AAAAAHHHHHHH!!!!!!
This weekend was FANTASTIC. Friday, Maryah went to celebrate Maddie's birthday. They went to Highland Fest, swimming and then had a sleep over too! The girls all had fun there.
On Saturday we had our BIG shopping trip with Grandma Caroline, Nikki, Natalie and Deb. We went to David's Bridal first so the girls could try on dresses. Nikki found a dress and the girls tried on some beautiful bride's maid dresses also. Then it was off to Khan's for lunch and Target for the "shopping spree". Maryah got all of her school supplies and plenty of fun stuff too...CDs, clothes, shoes, jewelry. I think she's set for a lifetime actually. We had a bar-b-que later in the evening at Grandma and Grandpa Frascone's house. That was a blast too! Lots of fun and a late night with lots of good food to eat. Sunday was a day of rest and relaxation, the first one in long time. We stayed in our PJs all day and watched movies, played games, painted nails, read books and ate a yummy steak dinner. It was a lovely day spent with my girls.
We will update after our appointments today. Dr. Petronio (Pastrami) needs to give the okay on Maryah's incision to begin chemo. Then we're off to Dr.Slomiany (Salami)for a quick visit about some info we've all gathered. Talk to you soon!
Love and Blessings,
Rachel/Mama
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Good morning!!
Maryah Here. Like my ma said I am at work with here. We are having a lot of fun!! On Saterday we found a beautiful dress for nik and we are not 100 percent sure on the bridsmaid's dresses but we are preatty sure. They are beautiful!! Well we will update agian soon all my love.
God Bless!
Maryah
Friday, August 12, 2005 12:11 AM CDT
Hello everyone!!
I am at Angie's house right now. I was very soar when I woke up so I decided not to go to camp. I was kinda bumbed because today was the last day but ya gotta do what ya gotta do. We just got done with lunch and now it is nap time!!! They are all just starting to talk, oop's I mean sleep. HAHA!! Morgan is feeling a TON better. She has been very happy and very very very very ... talkitive!!!!!! I gues that's just what four year old's do. That's ok though. Well I am going to go. Have a good afternoon!
Maryah
Tuesday, August 9, 2005 8:30 PM CDT
Hello everyone!
Right now we are out at Auntie Jo Jo's house. We picked up Morgan after tests today and came out here. Tests went good, for all we know right now they are clear but some we won't hear about for a few days. We met a lot of new people today. We met with the radiation lady and her name is Dr. Farniak, she was very friendly and very helpful with all of the questions I had. After our appointment the nurse showed me the radiation room and the table I will lay on when I get radiation. She told me that I would have to wear a mask over my face that I can see and breathe through but it will keep my head in place for the radiation beams. Then she showed me the room my parents will stay in where they can see me on a camera while I get radiation. After we were done at the radiation place we went to St. Paul Radiology for a CT and PET scan. My Nuna's friend Greg came to get me for the CT and my Mom and Dad had to sit in the hallway. Greg gave me an IV and the CT all while Mom and Dad were away from me...I DID GREAT!!! Then for the PET scan they gave me medicine in the IV and I had to sit for 45 minutes and then the scan took 55 minutes. IT SUCKED!!! Nuna's friend Greg bought me, Mom and Dad dinner from Cossetta's...it was yummy and very nice of him. Morgan isn't feeling well - she had a little accident in the car. We had cookies and milk with ice tea too at A.Jo's house. I'm tired and we're leaving soon so I can go to bed. Dance camp tomorrow. Can't wait. Goodnight!
God Bless,
Maryah
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As Maryah said we are tired and it has been a REALLY LONG day. After a ton of tests we are finally done for the day. We even made it out to the 2nd annual Keys Family Golf tournament in between tests. This year's recipient is a sweet little one named Kylie. We got to visit with the Key's family and good friend Bomb for a bit before going back to meet with Dr. Farniak.
Maryah had an ECHO, EKG, meeting with Dr. Farniak, CT and PET scan today. No results yet and will most likely hear from Dr. Slo sometime soon on those, will keep you updated.
Making for an even more interesting and exilerating day Morgan was not feeling good in the car on the way to my Sissy's house. Thank GOD for sister's who will help clean your kid, clean your car and then serve you warm cookies and milk to soothe your soul after a CRAZY day! How blessed am I? Tomorrow is back to dance camp, back to Angie's and back to work for another "normal" day. Looking forward to it. Hope everyone is well.
Love and Blessings,
Rachel/Mama
Sunday, August 7, 2005 2:44 PM CDT
Hi everyone!!
I am home form the cabin!! I had the time of my life! We did everything you can possibly do at a cabin. We went fishing we went boating, shopping and much much more. Right across the ally in the back of the house about 100 year's ago there used to be a train track and so my cousin Dorian and I went and took the metal detector and the shovel and dug up old old pieces of the train track and have them right in the front of the cabin. We both had so much fun doing that! The funniest part when we were looking for the metal was I was using the metal detector and I got it to close to my leg and so we thought we were going to find something when it turned out that my leg was going off. We all were cracking up on that one. Yesterday for out last day we decided to go to a place called moon dance ranch. Moon dance ranch is a dear farm but there aren't just dear there are goat's, bear's, wolf's, cow's, horses, pig's, bunny's and a ton more but then the best part was you got to feed them all except for the wolf's but other wise you got to feed all of them. It was soooooooooooooo cool! Then after that we went shopping and I got a lot of stuff!! I got a shirt, a sweat shirt and lots of stuff that is lavender. Lavender is my favorite smell in the entire world!!! I love it! Anyway we did so much it's not even funny. I am sooo tired!!! Well I am going to go! Thanks for checking in!
Maryah
Thursday, August 4, 2005 10:12 AM CDT
Maryah is enjoying her time at the cabin with her "Sissy", mom, aunts, uncles and cousins. She has stories but we'll wait for her to tell you. Just know she is laughing a lot and has an incredible calm about her.
Yesterday Rachel, Nuna, and I met with Dr. Slomiany to discuss a course of action. In short, here is the plan:
-Next Tuesday we will meet with Dr. Farniak (the radiation oncologist), have another CT Scan of her head with contrast to check that everything is clear, a PET Scan, and a heart echo.
-August 15 we will meet with Dr. Petronio to see if the incision has healed enough to begin Phase 1 of her treatment.
-Phase 1) Chemo, radiation, and stem cell rescue.
-Phase 2) The "big Push" - she'll receive a highly charged version of chemo to knock-out any remaining cancerous cells. Maryah could be in the hospital anywhere from 3 weeks to 3 months depending on how her body handles this phase.
-Phase 3) Maryah will have a stem cell transfusion to regenerate her system.
We do not yet know how long each phase will be. Since the tumor was removed we have no way of measuring, exactly, the progress we are making. Dr. Slomiany has our complete confidence and we are a true team. Per Rachel's vigilance we are now in contact with experts from around the nation in the field of sarcomas, specifically Ewing's.
We are also receiving support from the Wyckoff family...thank you Sue and Peter. Your words of love and advice are a comfort to us in trying times.
We will keep you posted as life happens. Much love, don't be afraid to be a blessing to others, and remember to "stay prayed up".
Zach/Dad
Tuesday, August 2, 2005 10:16 AM CDT
Hello!
It's maryah. My dad brought me to my mom's work right now to pick up my med's and so we are just hanging out here for a while. Tomorrow we are going up to the cabin in Walker, MN!!! I am very excited! My mom and dad are going to meet with Dr. Slomiany tomorrow morning to make a plan for chemo and all that and then we are heading up to the cabin. We will be there for three day's. My Uncle James has a spike hat and bubble glasses and we decided that that would have been a good chemo hat so we are going to get the hat and glasses so I can bring them to the hospital. Well I am going to head out. Thanks for writing!!
Maryah
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Hi there!
Mama writing too. Maryah, Mo and Zach had a nice visit to the Nursing Home as Maryah mentioned and we had a great day yesterday. Maryah learned how to crochet at Borealis Yarns and then we went to the Omni theater to see STOMP!!! What fun that was. We are getting ready to leave for the lake tomorrow. Should be lots of fun as it always is with U.James and A.Jo Jo. A.Kim and U.Greg are even going to come up for a day to visit. Yay!
Today is a good day as it always is when we are smiling. Can I say that I never realized just how unshakable our faith is? Maryah, Zach and I...even Mo have this faith that seems to be overwhelming us with peace, warmth, love and calm. Again, as it was last time...I cannot explain it is just there. Thank you for your prayers, they are working. I found some pieces in a book today that touched my heart and I wanted to share:
"For I know the plans I have for you," declares the LORD. "Plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
"Sometimes it's easy to think God needs our help- a little nudge in the right direction. But we forget that we're dealing with the Creator of the universe." - M.W. Smith -Healing Rain
Often the best place to start is at the beginning. Well, here we are at the beginning of another unknown road and we will walk hand-in-hand with love, happiness and strength. Please join us and find joy in the journey.
We plan to...
With much love and many blessings,
Rachel/Mama
P.S. I will be updating the pictures in the next couple of days so check back. There are some great pics from RIS last Monday night.
Sunday, July 31, 2005 9:30 PM CDT
Hello family,
Maryah had a nice weekend. She had some R&R as well as time to digest the news. One of the doctors last week came into the room to talk with her. He said "You want me to be honest, right?" and she said yes. He told her when Ewing's returns "it does not look good". She asked if she would make it and he replied "I hope so". After he left the room Maryah told me with gritted teeth "I am going to FIGHT this!" She then shrugged and said "I am strong, I will beat this again".
There was a study done on 900 people who had Ewing's sarcoma and only 2.3 percent had it in the head area. Maryah said from the beginning - in 2004 - she would be willing to join studies and further research so she could be part of efforts that will help others down the road. The rarity of it returning in the head will surely impact future diagnoses and findings. We must look for the good throughout this "safari" ("journey" in Swahili as Nancy shared in her entry).
Thank you for your thoughts and prayers. We will keep you posted as life happens.
Lovestrong,
Dad/Zach
Friday, July 29, 2005 11:21 AM CDT
Hi!!
It's Maryah! I am feeling a ton better. I got a full 12 hour's of sleep last night. That felt soooooooo good to sleep for so long! My head is sore but I am a tough cookie so I know i can do it. We are not sure if I am going to get out today but we hope I can. During the night I have been having a lot of dreams,some good and some bad. I am having a ton of visitors here yesterday and today. My grandma, grandpa and two aunt's bought me half of Target and everything that will keep me busy during chemo and then my Mom's work pitched in and got me $115 gift card for Target so by the time I am done with all my shopping I will officially have all of Target in my room. Well thank you all for writing to me. All my love. God Bless.
Maryah
P.S. Mom made a mistake on yesterday's journal. The bag of goodies that Nikki, Natalie and Carolyn brought were from ALL of Mom's friends at Stillwater Good Samaritan Center. They all pitched in and got me the gift card, the presents to keep me busy AND beautiful flowers!!!! They are so cool!Thanks guys!!!! That is really awesome!____________________________________________________
Hi again...Mama here. We just had a visit from Dr. Petronio and he removed Maryah's bandages and drain. She did very well. It only hurt her for a second. She says it feels good, and much less heavy on her head. The incision looks good and she will even get her hair washed tonight already. Dr. Petronio gave to okay for Maryah to go to the lake next week and get all of her shopping and dance camp in by the 13th. He will see her once before they start chemo to make sure her incision is healed. We have our instructions from him and he has discharged her. Now we need to see Dr. Messinger quickly before we leave and then we will be on our way home.
Our good news for the day is that Maryah's CT scans were negative for any metastisis of the Ewings which means it has not spread. That is a good sign and we are more hopeful today. We have asked everyone that is surrounding us to stay positive and and smile until they believe it. It helps us to keep hope alive and keep our spirits up when we are surrounded by it. The Doctors and Nurses from Children's have agreed this is a GREAT idea! They will be right on board!
We will update as things progress along. Tonight we will be at home resting and watching movies. You may feel free to call.
Thanks to all for the support and love you are providing for our family...words cannot express as usual.
Love and Blessings,
Rachel/Mama
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As you know we were side-swipped by this news a week or so ago, however, we are reminded again that the key is to keep on living fully. When you think about it, the future isn't ever certain. I know it sounds so general and maybe even fluffy but "remember to smell the flowers". We have flowers in the hospital room - some from Maryah's friend Maddie and her mom and some from Rachels friends at work - and there is so much detail, color, and grace in those flowers...just like our "Little Flower". I may sound sappy but I'll risk it. Just look at the picture above and you too will smile which means you too are a little sappy. In times like these it is alright. Take care of yourselves. Much love and many blessings...
Zach/Dad
Maryah is smiling...
Thursday, July 28, 2005 12:18 AM CDT
Good Afternoon Family,
We do not have the best of news - we want to be up front and straight-forward with all you about the information we have thus far. Dr. Messinger (Oncologist) came through this morning and told us that it is "not good" when Ewing's reoccurs. They may be able to treat it successfully and that will include intense chemo therapy as well as radiation. He is waiting to hear from the Oncologists at Mayo and UofM to find further information for our planning. They are unsure if they will be able to treat this successfully. That is the hardest part to hear. Though this is hard news we will continue to "stay prayed-up". Our faith is our foundation! Maryah is firm in her decision that she will fight this. So....we will fight and fight and fight and fight. That is our plan right now. We will not know or be able to update more until we do further tests over the next week or so to determine if the Ewing's is in any other part of her body. That will include, CTs, blood work, bone marrow aspiration as well as possibly a PET scan. She will have her port re-inserted next week and then we may still go to the cabin with Jo Jo and James for a bit of fun in the sun. The doctors have encouraged us to keep our plans. Dr. Petronio will not allow chemo to begin until a bit of time has passed for her head to heal. They prefer a months time and we have talked about giving it a couple of weeks and then starting.
This is a trying time. We just simply know that we will PRAY until we can't pray anymore and then we will leave it to all of you to keep praying.
Maryah has so much of life to live. She said she can't go anywhere because she has a lot of shopping to do. We will continue to keep you updated as we can. Thank you for your encouraging messages, love and support.
Love and Blessings,
Rachel/Mama & Zachary/Dad
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Hi it's Mama again. Just sitting here watching the baby sleep soundly...finally. She has been restless but now she is finally peacefully resting. In the quiet of the evening I have been sitting here reading the messages that have been posted. It is one thing in particular that was mentioned about this being the Doctor's diagnosis but not God's and that He loves miracles as much as we do! I will pray for miracles, for my sweet baby to experience blessing after blessing and the sweet miracle of being cured. I realize that God is the Master Creator and it is His will in which we will move. I pray it is His will that Maryah be well and be happy. Thank you so much for checking in today and know that I will update as soon as I can. Maryah was happy and smiling this evening surrounded by her Papa Denny and her friends Dianne Martin, Megan and Allie, Maddie and Barb, Nicci, Natalie and Carolyn. She already has been blessed today...people who love and cherish her and the ability to smile and laugh through even the toughest of times.
Love and Blessings...Good night!
Wednesday, July 27, 2005 8:17 PM CDT
Dearest family and friends,
The news today following her surgical procedure and biopsy was not what we were hoping for. Although the pathology report will take some time, her surgeon believes it is a return of Ewing's Sarcoma. A small circle of diseased bone of one layer of her skull and "lump" were removed and replaced by a small titanium shield. I will let Rachel and Zach tell you more of the details when they are able to talk and write. Maryah will recover in the hospital for a few days and go home when she feels up to it. Dr. P (sorry I forgot his name...something like Petroneo - Maryah called him Dr.Pastrami!) believes that she will need chemo again soon and possibly radiation. Honestly folks,that's all I can remember. Encircle this family of Maryah,Morgan,Rachel and Zachary in your love and hope for a bright future. They are the most incredible foursome I know!Much love to you all, Nuna/Mom/Elaine
Hello all,
Just got off the phone with Rachel...and Maryah has come out of recovery and is aware of the findings. It was her first question, to which Rachel has answered honestly. Maryah's response, and I quote..."I'm strong."
Well, as many of you know this young woman, it comes as no shock the way she handles this disease. She is truely a child of God and my heart tells me that He will once again lead her through this.
Rachel informed me that she will update tomorrow after more info from the docs is passed her way. Zach and Rachel both would like to extend their thanks for the many prayers being offered. They also have the request, as the last time, to please hold your phone calls and visits until further notice. They are all in need of absorbing this new information and dealing with it slowly.
With love-
Joanne/Auntie Jo
Wednesday, July 27, 2005 8:43 AM CDT
Hi!
I know I just wrote yesterday so if you didn’t get to read it and you want to you can go to past journal entry's to see what I wrote. I am very nervous! I just took a long shower so I am nice and clean before the short stay in the hospital. We are going to go and drop off Mo at Angie's house and she might spend the night but that's only if both my parent's sleep down there, the nurses might only want one parent to spend the night. I am hoping that I can stay on 4200 but they might want to keep me in the ICU. I am REALLY hungry and I can't eat anything before they're done so that really stink's. Well I am going to head out. Thanks so much!!!
Maryah
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Just a quick update before I leave for the hospital. I have attempted to keep my mind occupied by coming in to work...it's not working. I, like Maryah am nervous. I know that it's the Lord's will whatever happens but it doesn't relieve my stomach and heart ache. Maryah is remarkable and she will be strong through this as she has been strong through everything else she has endured. I am confident through my daughter's strength. Grace under pressure as I have said many times....she certainly has that down pat. We will update the website as soon as we get a report from pathology. If we aren't going to get that report today then I will update as soon as possible on how the biopsy went. We are scheduled at 1:15 so start getting "prayed up"...we are!
Love and Blessings,
Rachel/Mama
Tuesday, July 26, 2005 6:53 PM CDT
Hello!
I am at home for the last night before the big day. I am very nervous but I know I can do it. I am a little nervous about having a new surgeon just because I am so used to having doctor Roby, but this surgeon is very nice and I liked that he has a positive attitude. My aunty Krista is a nurse at the hospital and she said that he is one of the best so that made me feel a TON better. Today I went to school, then I my dad, nuna, mom and I went to Carbonie’s for lunch that is right across the street form SPA. After that I had a bone scan down at St. Paul Radiology and that went well. I hate trying to stay still for those thing's because when I try I always twitch and then they get mad. Well I am going to go because we are going to take a little ride to get out for a bit so I am going to close in. Thanks for all the notes and if I am feeling up to it I will write while I am in the hospital. Thanks again! God Bless!
Maryah
Monday, July 25, 2005 9:43 AM CDT
Good Morning! Just a quick update for the new week. Thank you all for your astounding love and support. It's wonderful to get all these messages and e-mails. I really can't begin to tell you how humbling it is to know how many people genuinely care for our baby girl.
We met with Dr.Petronio from Gillette Children's Neurosurgery group on Friday afternoon. He met us at the Hem/Onc Clinic and will be performing the procedure at Children's St. Paul. He seems like a very good Doctor. I have been told by "Auntie" Krista that he is very good, one of the best.
He felt the lump and looked at the CT. He is going to make the incision within the hair so that there will be no future scarring on Maryah's forehead. He said that if the bone density allowed they would be able to just scoop out the lump that is behind the skelatal bone and if not they would drill a small hole through the bone. Maryah may be in ICU for the day or two following the procedure. She may be able to go to her favorite floor 4200! We will play it by ear. As much as I know everyone would like to visit I would like to request that there be no visitors without a call prior to check in. Maryah may need more rest then we anticipate but she may be up for visitors. Please just call and talk to Zach or I first. I appreciate it!
Dr. Petronio thought that if this turns out to be Hysteocytosis it is easily treated and that it would be strange for a Ewing's to reoccur in this area with no other signs from the lung region. We will hope and pray that his thoughts are correct.
This is going to be a good week with positive results. I can feel it in my soul. We are all working at just the day-to-day living and keeping our minds occupied with things other than Wednesday's procedure. I haven't heard from scheduling but it sounds like the procedure may take place at 1:30 on Wednesday.
Tonight however we have much bigger plans! REIN IN SARCOMA!!! Hope to see you there. We are looking forward to the event and helping raise money for Sarcoma research. Thank you again for your continued love and support. We will keep you updated and you keep "prayed up".
Love and Blessings,
Rachel/Mama
Hello everyone!!
It's Maryah! What's up?? I am at Angie's house and Rennie and I are about to make colored salt so tomorrow we can make picture's out of it. Today I went to school and then tomorrow I will go agian but then on wed I think I am just going to stay home. I kinda changed my mind about not being scared. I am not "scared" persay but I am preatty nurvus. Everything will go great though. I hope to see you all at Rein in Sarcoma event tonight!
All my love.
Maryah
PS. Thank you all for checking in with me!! It makes me feel so much better when I see all these people writing to me and praying! Thanks agian.
Wednesday, July 20, 2005 9:40 PM CDT
Hello family,
Yesterday Maryah had her quarterly scans and everythintg came back fine. However, upon further dialogue with Dr. Slomiany Maryah informed him of a small bump (about the size of a quarter) under the skin on her forehead. That needed an x-ray, then a CT scan, and now an MRI. There is something there but we do not know what that "something" is at this point. We went to the MRI appointment today, however, they did not want to do the MRI because they did not want to risk damaging the metal piece in her leg (since MRI's are magnetic). So now we are contacting the company that made the prosthetic to determine whether or not she can have an MRI. We will hopefully find out in the morning. Maryah does have a tentative MRI at 10:30am tomorrow should we get the go-ahead. Regardless, she will have a biopsy within the next few days. Maryah knows what is going on and she is in good spirits because that is who she is as a person. We talk about our faith being strong and that 1) God is always with us, 2) we can always go to God in good and not-so-good times, and 3) since God is our blessing then one of the greatest blessings is to be a blessing to others. Maryah has always understood the essence of helping others. It was somewhat of a coincidence that her mother and I named her (middle name) Therese since St. Therese - "the little flower" - is the Patroness of all missioners. We talk about a good friend of mine who always says to "stay prayed up!" and we have been for a long, long time.
Some people around the globe believe tears are the purest form of prayer and so today we prayed in this way together while acknowledging the tears are not out of fear or worry, rather we let them fall because we are just bummed she has to go through this for now. But these are just some of the many steps she will take in her life. We are prepared for whatever happens. All of this could come back as nothing and even then we would be thankful for this experience because it brings us closer to truths that often go untouched and unmentioned. So please remember to touch those truths within yourself, be a blessing to others, and remember to "stay prayed-up".
We will keep you posted as life continues. Peace and love
Zachary/Dad
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I decided just to add to the entry since Zach/Dad's entry is so beautiful and genuinely appropriate. I am so grateful for the support we have come across once again as we encounter uncertain times. I say uncertain because they are just that...not fearful or stressful just uncertain. God allows us the peace you see in Maryah, Zachary and I. It's not a lack of concern or care it is simply through the grace of God that we are calm, reflective and decisive. Today Dr. Thompson informed the MRI techs that he advises against an MRI due to the possibility of ruining the mechanical piece of the femeral prosthetic. We are now waiting to hear from the HEM/ONC clinic to determine our next steps. It seems like we are just waiting to hear from neuro surgery as to when they will schedule the biopsy. I am thinking they will have to go in based off of the pictures from the CT scan.
Prayers that this is nothing more than a benign mass are necessary. I believe that it will be a positive outcome...no matter what the biopsy says.
We are looking forward to Saturday at Square Lake for the annual Emerson family picnic. We will be there with bells on...no matter what!
Love and Blessings,
Rachel/Mama
Hello,
It's Maryah!
Although both my parent's have areat updated I thought I would write a little something too. I was worried at first when I saw it on the x-ray but you know what, just like my mom and dad said, God is alway's with me and he is watching over me and evrybody at all times and I decided that I would like to keep it in the hand's of God and not worry about it. I hope you all are having a great week!!! God Bless!
Maryah
Monday, July 18, 2005 6:02 PM CDT
Hi Evrybody!!
How are you all?? I am great! I thought I would update because I haven't in a while. Yesterday I went to my friend Jordynn's golf tourney to raise money for medical bill's and we did it! We got $19,000 in the half hour that the silent auction was on and people could still bid. We had a blast!! She and I drove around on the golf cart the whole day taking pic's and just watching people golf. Plese keep her in your prayer's! I am at Angie's house right now baby sitting Nick and Steven. I got them situated with coloring and so I thought I would do this quick and then go play with them. I hope everyone is having a great week so far!! I will update agian soon. Thanks!
Maryah
Just a note asking for extra prayers for Auntie Annie. She had some emergency surgery, and is in the recovery stage at this point. She seems to be doing very well, and says she'll be at Sqaure Lake, this Sat., if she has anything to say about it!!! So let's ask God to give her a little extra healing power this week!! We love you, Auntie Annie!!!
Auntie Jo
Friday, July 15, 2005 9:44 AM CDT
Hi Everyone!!
What's up? I get to spend the morning with my Dad and Morgan at his work. We are having a blast!! In just a little bit, my Nuna is coming with my long lost relative. Her name is Cariann and she came to California when my Dad and I went there for my cousin Rob's wedding. She was so awesome and we got along great! I know it is a short journal but, she just showed up so I am going to go visit.
Ry
Tuesday, July 12, 2005 8:36 AM CDT
Good Morning,
Just wanted to get in a quick update. I am sure Maryah will update again soon as well.
It's almost time for the big event...Rein In Sarcoma at Como Conservatory/Carousel! Monday, July 25th. Please visit the website at www.reininsarcoma.org for event information. We look forward to seeing you all there!
Maryah will have her quarterly scans on Tuesday, July 19th. This round she will have chest x-rays and a CT and a visit with Dr. Slomiany. Keep her in your prayers as we are hoping for another clear check.
We continue to meet kids battling cancer, kids and adults who are or have battled Sarcoma's and survived. It is inspirational to hear success stories and it certainly saddens our hearts when some battles end as we hope they don't. We lost our friend Tucker on June 25th but heaven certainly gained a wonderful angel in him. If you'd like to visit his site and leave some encouraging words for his family please feel free at www.caringbridge.org/mn/tuckster. We had the pleasure of meeting Tucker at the clinic at our last visit and he sure was a fighter. Our deepest sympathies go out to his family in this difficult time. We are still keeping Chance and his Mom, Patty in our prayers as well as they struggle through new challenges.
Through all of the struggles and heartache there are so many children including my precious Maryah that keep lighting up the world. I am ever thankful for that. Thank you all for continuing to visit and leave messages.
Love and Blessings,
Rachel/Mama
Saturday, July 2, 2005 8:39 AM CDT
Hello!
I have some very exciting news! My leg is totally straight on the ground. I am very excited about it!!! Last night I was at my Dad's friend's house and she asked me how my leg was doing and I told her that it was getting a lot better so I sat on the floor and I straightened my leg and it was completely straight on the ground and it was even with my other leg. I haven't had my leg straight for a year and two months. That is a long time. Now I am also walking a lot better. No more limping!!!!!!!!!
Tomorrow I am going to my cousin Kaitlyn and Arielle's house. We really don't get to see them very often but every Fourth Of July the whole family goes up to Little Falls to their house because of the holiday and to celebrate Arielle's birthday. We always have a blast!!! They have a huge pool that they can blow up and all the kids swim in it and then the adults can be adults and sit and talk. I hope all of you have an awesome Fourth Of July weekend!!! All my love!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Maryah
Wednesday, June 29, 2005 9:18 AM CDT
Hello,
How is everybody? I am not doing so well. I am sick with who-knows-what. I have an upset tummy, a sore throat, a really bad cough and a lot of head ache going on and off. Yesterday, I went to the Doc and he said it's some kind of virus and there's some kind of bacteria in my bod. My strep test came back negitive so that's good. He gave me an antibiotic. Another one is just a cough medicine to help me sleep without waking me up. I am doing pretty good otherwise! I am doing good in school. This is my third day that I have missed school because on Monday I left school after the second class and then I missed yesterday and today. I will have to make up some time next week. Well I really should go rest I just wanted to let you know how thing's are going though. All my love!!!
Maryah
Tuesday, June 21, 2005 4:23 PM CDT
Hello!!!
Yesterday I started my tutoring at SPA school. All the teacher's are REALLY nice!!! I am taking four differen't classes in two week's. The first one is math the second one is writing/cursive the third one is Reding/spelling and last but not least just a normall reading class. I am really enjoying myself and really trying my hardest in all of the subject's. Like I said I will be doing those four classes for two week's. After the day is ended at SPA my dad comes and get's me and will take me over to Angie's house. Tomorrow instead of coming to Angie's after SPA I am going to my really good friend's house, her name is Sara Harrington. She is really nice! She has one of the most positive attitude's ever!!! We are going to be doing the famous scrapbooking!! Sara likes to scrapbook just as much as i do (I can tell)! Please, still keep chance, patty and there hole family in your prayer's, they really need them!! I hope you all have an excelent evening. All my love!
Maryah/ Ry
Chance's site- www.caringbridge.org/ga/chance
PS. Look at the new saying's at the top of the page under my pic!!!!
Wednesday, June 15, 2005 12:19 AM CDT
Prayer's needed!! PLEASE PRAY FOR MY FRIEND CHANCE'S MOM PATTY. SHE HAS JUST BEEN DIAGNOSED WITH CERVICAL CANCER SO PLEASE KEEP THEM IN YOUR PRAYER'S!!!!!!!!!!! GO AND VISIT THEM AT HIS WEB SITE. www.caringbridge.org/ga/chance
___________________________________
Just a quick added note (Mama here). Chance is a kid who is consistently there for so many kids and families going through cancer. He is a tremendous inspiration and his family is in need of prayers and inspiration right now. Visit the site, leave some encouraging words. He could use a little sunshine.
Thank you!
Love and Blessings,
Rachel
Monday, June 13, 2005 12:37 AM CDT
Hi!!!
How is everyone?? I am great. Today I am spending the day with one of my favorite people, Angie! We are having a great day! We just got finished with lunch and the kids are just starting to talk oh I mean sleep. Morgan is sick today so she has been kind of kraby but she is going to take a nap right now and then my mom will come and get us and we will take her to the doctor because we think she has an ear infection. Right now I am spending some special time with another one of my favorite people, Reenie!!! She could make anyone's day a better day with her alway's positive atitude! I hope everyone has a good day today and tomorrow. All my love!
Maryah
Friday, June 10, 2005 10:36 AM CDT
Hola!
It's Maryah. I just thought I would write a jounal and let everyone know how I am doing. I am doing great!! I am atwork with my mom right now but she left for about an hour so I am just here with my granny and nicky. We are having fun! When she gets back someone is going to get some of the staff some lunch but we don't know what where getting yet. We are probily going to get some salad's from culver's or from the salad bar at kowolske's. I hope u all have a great day. I am going to get back to work now. Talk ta ya later.
Maryah
Wednesday, June 8, 2005 9:22 PM CDT
Well, Maryah is now officially a sixth grader. She finished her last day at IHM-St.Luke's as a fifth grader today!
It will be a busy week with numerous "out of school" parties she will be attending starting with a pool party at Sarah H's house today. What fun swimming for three whole hours. Tomorrow is a hot tub party, Valleyfair for Megan M's birthday on Saturday and a sleepover at that.
Talk about a social life. I don't even have it that exciting.
Maryah will be working on 6th grade preparation this Summer with some workshops at SPA, private tutoring with Mrs. Burns and a bunch of fun projects to sharpen Math and Reading skills. Maryah will also spend some time at Angie's this Summer helping with the smaller kids. In between all these activities she will find some time for dance at DDs Summer Camp. Lots of fun things to look forward to this Summer unlike last Summer!
I'm proud of Maryah and all she has come through. I want to thank you all for sticking through this time with us and keeping up on updates and messages. It is so very encouraging to have our friends a family in regular communication with us.
Maryah will have her next set of scans at Children's in July and I will update after those. Maryah I'm sure will keep you updated on all the fun she is having this Summer.
All of our love and best wishes for a wonderful Summer.
Love and Blessings,
Rachel/Mama
Sunday, June 5, 2005 9:37 AM CDT
Hi!
It's Maryah! I have a really fun day planned! Today we are going to Grand Old Days! I was actually going to be in the parade but I decided not to because I would rather be with my family and friends then walking around and waving at people I don't even know. At about 10:30 I am going over to my friend's house who lives on Grand and we are going to sit on their lawn and watch the parade. That's going to be super fun!!!! Then at about 1:45 I am going back to my Mom's house and that's exciting too!! For Mother's Day I got her a mother's ring and it came in the mail so I am really anxious to give it to her! I hope you all have a great day!! All my love!!
Maryah
Friday, May 27, 2005 8:59 AM CDT
Hi Everyone!!
Today (Friday) I don't have school so I came to work with my Mom and I am just hanging out here today with her my Grandma Caroline and Nicci. When I got here there was a HUGE birthday gift on my Mom's seat for me. It had, two pairs of flip-flops, a purse, a big kit of make-up and the coolest thing, a pedicure set. I will update soon. All my love.
Maryah
Thursday, May 26, 2005 11:16 AM CDT
Hi everyone!
Thought I would update since once again it has been too long. Maryah has been working on finishing up the school year and will be working to prepare for the 6th grade, junior high as it is now considered!
Our next set of scans is scheduled for July. Maryah's last set of scans were clear. We had some time after that scan where there was a little concern about the bone density in the upper femur above her prosthetic. We later confirmed with Dr. Slo and Dr. Thompson that all is clear and they were maybe just looking at some osteoperosis. We always hold our breath until we here the positive news. So far it's all been positive outcomes and we are ever so grateful and blessed for that.
Maryah saw Dr. Thompson who is very impressed with how far Maryah has come on her own with full extension of her knee. She's got a very little way to go to get to complete extension. He gave her some excersises to do to strengthen her hip muscle in an attempt to correct her current limp. Maryah is now working diligently to reach that goal. She is very motivated to get through this. The other good news Dr. Thompson gave her came the week of her recital at DDs Dance. Maryah can continue her to dance as long as she doesn't have any pain. She is ECSTATIC to get back into dance and gain all her strength back! I am so excited for this news as well. As any mother does I just want her to have fun and do what she loves and dance is something she has a real passion for. The good news was welcome and comforting.
Dr. Thompson took some baseline leg length films and doesn't feel she needs to have her prosthetic lengthened quite yet but soon. She is growing like a weed and I imagine within the next six months we will look at that again.
We are coming up on Sarcoma Awareness Week beginning on June 12th. Once again I encourage you to visit the Karen Wyckoff Rein In Sarcoma website at www.reininsarcoma.org for more information and for further updated info on the Rein In Sarcoma event scheduled for July 25th at Como Park.
We are once again blessed with friends and family that are contributing donations to the Silent Auction to be held at the Rein In Sarcoma Event. Megan Barrett and McGough Corp made a donation for tickets to an Ordway Show and Amy "Bomb" Bomberg-Mohowald and Keys Cafe made a donation of gift certificates. We are still looking for any donations we can collect by July 25th. If you are interested or know anyone who is interested please contact me and let me know. Also, if you are interested in volunteering for the event we would be happy to have any extra help we can get.
Thanks for all of your continued love and support. Your messages are wonderful and Maryah enjoys getting them.
We are so very blessed to have you each in our lives.
We'll update again soon.
Love and Blessings,
Rachel/Mama
Saturday, May 21, 2005 2:42 PM CDT
Hi!
It's maryah. I just thought I would update quick. How is everyone's day going? Mine is great except I have a cold along with a slight fever. I am just reasting and hanging out. today we are going to a party for my cousin's graduation. Most of the Tift family will be there (Witch is a LOT!). tonight morgan and I are going to spend the night at my grandma and grandpa's house then, tomorrow my dad will get us and we will spend the day with him. sorry it's a short one this time but, we are running late to the party so I will write soon.
All my love. thanks for writing!
Maryah
Monday, May 9, 2005 10:57 AM CDT
Good Morning,
Just thought I would get out here and add a journal entry. The month of May will prove to be a busy one with many things taking place.
On May 6th we celebrated our friend Maddie's life on the one year anniversary of her passing.
Maryah had a birthday on Saturday, May 7th. Maryah turned 11 years old and we celebrated with some of Maryah's friends from school and cousins Kaitlyn and Arielle. They danced for a bit at DDs Dance Studio and then made purses after enjoying supper at Cousin's subs. Zach and I with 13 pre-teen girls...very interesting! They had a great time and Maryah enjoyed her day.
Mother's day is always special with my girls and I loved having a day to just spend with them out at Auntie JoJo's house. We grilled and had a nice day to play outside.
This week Morgan will be dancing in the DDs recital at Sibley on Friday night. She is really looking forward to that. Maryah will also perform a bit in the finale with her sister. FUN!!!
This month we will visit Dr. Thompson for some follow up regarding lengthening Maryah's prosthetic. Maryah will be finishing up with the 5th grade and preparing for the 6th.
We have lots to do and so little time to do it.
In the midst of all else Elaine and I are working with the Karen Wycoff Rein In Sarcoma Fund to plan the 2005 event at the Como Park Carousel to be held this year on July 25th. There are lots of volunteer opportunities if you are interested and if you are unable to volunteer your time we hope that you can join us for the main event where there will be entertainment for all ages and a silent auction with many neat items up for bid. Please visit the Rein In Sarcoma website at:
www.reininsarcoma.org
You can access through the link below as well. There is great information about Karen and the event as a whole. There are even some pictures of Maryah riding the carousel last year. There is also a link to the article that Maryah was in last year. We are so excited for this great event.
We hope that you have a wonderful month of May and we will keep you updated as we get any further news. Thanks for stopping by to visit. We love getting the messages.
Love and Blessings,
Rachel/Mama
Saturday, May 7, 2005 7:13 AM CDT
OOH OOH IT'S MY BIRTHDAY OOH OOH IT'S MY BIRTHDAY OOH OOH I'M EXCITED OOH OOH I'M EXCITED!! I am very excited ( if you can't tell)! I am going to be 11 today! I was born on Saterday May 7th 1994 at 10:05 A.M. For my B day I am having a big dance party at my dance stodio. This morning we are going to do our normal thing and go to dance and then after that we are going to bruger's with my family!
maryah
Saturday, May 7, 2005 7:03 AM CDT
OOH OOH IT'S MY BIRTHDAY OOH OOH IT'S MY BIRTHDAY OOH OOH I'M SO EXCITED OOH OOH I'M SO EXCITED!!!! I am very excited (if u can't tell)! I am going to be 11 today! Very exciding news people! For my party tonight I am going to my dance theater and I am going to have a dance party, then we are going to cousin's sub's and having dinner, then we are going to go back to the dance theater and are going to design purses and then do cake and then presents!! WAHO!! This morning I am going to dance with mo and we are going to do are normal thing that we do every saterday morning go to dance then to my fav brekfast place ever (Bruger's) but this time we are going to Bruger's with my family so that they can see me on my B day! Well thanks for taking the time to look! All my love!!!
Maryah
Saturday, April 30, 2005 11:23 AM CDT
Hello family and friends!
Auntie Jo here!!
Although Maryah or parents usually update, I thought I would mix it up a bit! I wanted to share a bit of reality with you all that are still keeping up with Maryah and family. Rachel and Zach, and Maryah herself, do such a wonderful job of letting everyone know how things are going. Their positive outlook on life is infectious. However there is much untold about daily life in the Emerson- Tift zone. Reality is that every day is yet a challenge to maintain Maryah's school work, to make sure the medical bills get paid, not to mention just getting up daily...going to work or school, and putting food on the table. This family continues to amaze me in the fact that the every day hardships are not spoken of. I realize that this is due to knowing there is much worse to deal with - such as Cancer. The unspoken fear of its return is sometimes overwhelming and I would like to share with you as well as my sister and her family that we all continue our support. I would also like to invite those of you in the picture to take a few minutes for an extra prayer today...that God continue to watch over these very special people in my life and yours. Maybe we can also find a little way to brighten their days in the next couple weeks. It only takes a bit of time and energy to make someones day... so let's be God's assistants and challenge ourselves to let this family know how much love is truely out there for all of them, even when they least expect it!! I personally want to thank all of you for the overflow of love that I see and hear of from Rachel and the girls. It makes more of a difference than you can imagine!
God Bless each of you!!
Joanne/a.k.a...Auntie Jo
Sunday, April 24, 2005 6:15 PM CDT
Hello!
It's Maryah. I just got back from The Lion King. It was so AWESOME!! We had VIP pases. We got these really cute little bags with hat's and a little book with crossword puzzel's and stuff. It's was cool! Because we where in the frount row the giraffes came and stuck there heads down so we could touch them. That was one of my favorit parts. All the characters sounded like the characters. It was scary how much they sounded alike. After that we went to Hard Rock Cafe and got steak. I am sooooo full! I went to the Lion king with Mo's dance teacher and her son and daughter and then her daughter in law and her grandaughter. It's a lot to explain, Anyway we had a blast! THANK U MEGAN, BRIAN, ALLIE, DDAND ALESHA!!!!!! I hope u all a have great evening! All my love!
Maryah
Saturday, April 23, 2005 6:19 PM CDT
Hi!!
HAPPY SATERDAY! How is everyone? I am GGRREEAATT!!!!! Last night I sleep over at my aunt and uncle's house with my Best friend Sara. We had a blast!! We played a newer game that's out called dance dance revolution. It was AWESOME!! In a little bit we are going to the same aunt and uncle's house that I sleeped at last night and we are going to her aunt's house who lives just down the block so we are going to walk down there with my aunt and uncle and have a BBQ at her aunt's house. It will be cool! She has two kids. One is in his teen's and the other is I think nine. There really cool! Well I have to go but I will write agian as soon as I can! Thanks for checking in!
All my love!
Maryah
Wednesday, April 20, 2005 7:08 AM CDT
Hi Everyone!!
I am really sorry I haven't written in a while!! How is everybody? I can't stay to long because morgan has her dance picture's tonight and this morning my mom is going over to Angie's house to do Morgan's hair for tonight and we can't be late to that but I just wanted to say hi! We will be changing the picture's some time soon! We haven't changed them since like November And I got High lites in my hair that I want to share with everyone! Well I have to go But I will write soon!
Maryah
Saturday, April 9, 2005 2:38 PM CDT
Hi Everyone!!
Sorry we haven't writen in a while!! We have been busy!! I am at my dad's house this week. We just got back a little bit ago. This morning we went to dance and mo got her dance costum for the recital. She looks so cute!! They all do!! The girl's coustum color's are gold and pink. Mo has gold. Wll anyway after dance we went to Bruger's Bagel's for some breakfast/lunch. I hope u all are having a fantastic weekend!!! I will write later.
Maryah
Thursday, March 31, 2005 12:39 AM CST
Good Afternoon,
It is another beautiful Spring day and we are so glad to finally have this beautiful Spring weather upon us.
It's been a long time since our last update on Maryah's health, etc. It seems strange to be living in a "cancer free" home. I became so accustomed to the daily routine of non-routine that coming back into a year without so much of that is taking some getting used to for all of us.
Maryah is in her third tri-mester of fifth grade and is doing well. We are working hard to get all caught up in every subject and will be working hard through the Summer as well just to keep on the up-swing.
Maryah is working hard at getting her leg straightened and has come a very long way. She is due to go back to see Dr. Thompson in about two months for a check up and to schedule her prosthetic lengthening. She is walking with only a slight limp and even ran through the raindrops last night on our way to family dinner.
Maryah's spirits are good and she is an amazing daughter whom I blessed to have. She teaches me something new every day.
Maryah has started taking piano lessons and is doing well with that. She is also acting as Dianne's teaching assistant for Morgan's dance class on Saturday mornings.
Maryah has been invited by our friends Megan Barrett, Dianne and Aleisha to go and see the production of The Lion King in a couple of weeks. Certainly lots to look forward to.
Maryah will have her next set of scans (bone and CT) at the end of April and we will update you on the results as soon as we get them.
We're looking forward to the Summer and lots of time outside and with family and friends.
Please keep in thought and prayer our friends, Liz Kaiser who is still battling her cancer (we're sure she'll kick it's butt). Also Julie, Maddie's Mom, as well as her sisters and brother. We are coming up on the one year anniversary of Maddie's passing and know that it must be a really hard time for them.
Please pray also for all of those families out there that are battling the beast we call Cancer. Kids have tremendous strength and resiliance but need our prayers always!
Happy Spring to all! Thank you all so much for keeping up on the site and continuing to leave Maryah messages. We still visit this familiar place regularly!
Love and Blessings,
Rachel/Mama
Sunday, March 27, 2005 7:27 AM CST
HAPPY EASTER!!!!!!!!!!
How are u all?? I am great!! We are just hangen' right now and in just a little bit we are going to go to mass at St. Luke's. Today I am not really sure where we are going to do after mass. We might go to my cousin's house with some family over there. that would be fun!! We would normally go over to my great gramma's house with ALL of are family there but this year we wanted to try it a little differen't so we are going to the other side of the family. Well I hope all of u have a great Easter!!!! I will write agian soon!!
Maryah
Monday, March 21, 2005 2:32 PM CST
Hi Everyone!!
How are u all?? How was your weekend?? Mine was Great!! As some of u read I was out at my A. Jo's house and we made really cool soap. I made one for my teacher and made a card for her also. At the end of the day we had a fire in the fire place and then we watched ladder "49". At the end it was really sad but the rest of the movie was AWESOME. Some parts kind of scary but after I watched it I said It was the best movie I have ever seen but I say that with all movie's. I had a blast over there and then on Sunday I cleaned the whole house for my mom and the baby sat my sis for a little bit and then I got payed. I told my mom that I would clean the house for her any time now. I Hope u all have a great SPRING!!!! All my love.
Maryah
Saturday, March 19, 2005 3:01 PM CST
Hi Everyone!!
How are ya'll doen'?? I am GREAT!! I am out at my A.Jo's house right now. We are hanging out making stuff. In a little bit we are going to make soap. She has all the stuff and said we could make it. We are probily going to stay for dinner but I am not quite sure. I know It's short but I don't want to be on the computer the hole time. I will write soon. Talk later.
maryah
Friday, March 11, 2005 9:53 AM CST
Hi Everyone!!
Happy Friday!! I Had the day off today so I am at Angie's!! I am having a BLAST!!! We have a visitor here right now just seeing if they like it here and then maybe they will come to the daycare. They are very friendly and very active. It's fun. This morning when I got here we had a little breakfast and then started making cookie's. That was fun. Well I know that it's a very short jounal but I really don't want to be roud so I have to go. Talk to ya'll soon.
Maryah
Wednesday, March 9, 2005 8:48 AM CST
Good Morning Everyone!
Just wanted to get a quick update out. Wanted to wait until our appointment with Dr. Slomiany yesterday before giving any info.
For a few weeks Maryah was experiencing a lot of pain in her LEFT leg. The pain was centralized to the same area her tumor began in the RIGHT leg. So we called on the Oncology clinic to review her last set of scans. Dr. Slomiany did not see anything suspicious but wanted to take a plain film xray yesterday to look again. We went in yesterday and they took the films, all of which looked very good. Everything looks normal and there is nothing suspicious that Dr. Slomiany could see. He believes that the pain may be muscular based on the amount of stress put on the left leg due to Maryah's limp. We will be working to correct the limp as Maryah does stretching and wears the Dynasplint to get her right knee extended. Dr. Thompson would like to see her fully extended within the next two months.
I am happy to say we are in the clear again! Just wanted to update on the current events.
Hope all is well and everyone is getting ready for Spring. Thank goodness it is right around the corner!
Love and Blessings,
Rachel/Mama
Saturday, March 5, 2005 4:48 PM CST
Hi!!
It's Maryah. How is everyone's weekend going?? Mine is going great!!I am at my a. Jo's house. We came out here after mo's dance class and it's looking like we are going to sleep over as well. That I am REALLY excited about!!!! My cosin Dorian went over to his friends house across the street to spend the night and my u. James is going out it sounds like so tonight it is a GIRLS NIGHT!! AWESOME!!!!!!!!
We are going to stay up and watch movie's and maybe have a little pop corn. Sounds like a fun girls night to me! For dinn we are having chines food ( my fav)!!! I hope u all are having a GREAT weekend! I will write soon. All my love.
Maryah
Saturday, February 26, 2005 8:37 PM CST
Hello again!
Maryah has been updating recently but I thought I would get out a "technical" update after our appointment with Dr. Thompson at the UofM on Friday.
After Maryah's last set of scans I ran into Dr. Thompson who said he would like to see Maryah and determine when they will extend her prosthetic. So...in we went on Friday to visit. Dr. Thompson is happy with Maryah's progress. He told us that she had gone from about 35 degrees of extension in October to about 20 degrees this visit. She is making progress slowly but surely. He is confident that she will be able to get to full extension without any invasive procedures. After feeling around the leg and examining Maryah he is not at all worried that the scar tissue is too bad. In his words "it should not cause her any problems".
We talked about the future of activities for Maryah and he would prefer she stay aways from sports or activities that require a deep knee bend but any impact sports are okay...no more dangerous than it would be pre-surgery. He said she could horseback ride whenever she got a chance and not to worry about any damage there either. He doesn't not feel that when she gets to full extension that she will have a permanent stiffness that will require daily stretching.
We had the opportunity to see the xrays he took of her leg. The prosthetic and knee are very interesting. Ry actually has an axel in her knee...funny, sounds like a car part! She is the bionic woman I guess!!! Heeheehee!
The femerul prosthetic goes a little higher than I thought toward the hip. It's almost the entire length of the femur. It was really a neat sight. Maryah got a kick out of it. Dr. Thompson also took a wrist xray to determine bone age and said that she is right on course at 11 years old. Doc would like to see Maryah get the knee extended fully in the next two months so he can extend the prosthetic then. He will be talking with our rep at Dynasplint to make sure that Maryah has an adequate brace to help with the extension. If the brace is not adequate (which he feels it will be) he will cast her leg and change it weekly in order to extend. We hope that there is no chance of having to do that as it would be a big inconvenience for Ry. I think we should be able to avoid that.
No other news at this point. Dr. Thompson is not concerned about any reoccurance at this point and seems confident that Maryah is doing well. We are certainly grateful and blessed for the continued good news.
God continues to bless Maryah and our family with health and peace!
Thank you for keeping up with us and the continued messages. Maryah really enjoys getting them.
I ask that you please keep Liz Kaiser in your prayers on Monday (and every day for that matter). She will be having her surgery at the UofM to remove her tumor.
We're pulling for you Liz and we love you a bunch!
Thank you all again.
Love and Blessings,
Rachel/Mama
P.S. Congratulations to Mark and Angie Rein...baby Steven Michael was born Wednesdy, February 23, 2005 at 3:49pm at 7lbs. 9oz. and 21". He is very handsome with a full head of dark brown hair and blue eyes! We love you guys and are very excited about the new addition!
Wednesday, February 23, 2005 7:13 AM CST
Hi!
How are u all?? I am GREAT!! Last night I went to meet Liz Kaiser. She is having surgery on Monday and wanted to talk but we were both kind of shy the first time meeting so we might get together over the weekend and talk more without the grown-up's around. It just depend's on how she's feeling and what they have planed. Well I have to go to school now but I will write tomarrow! All my love.
Maryah
PS. Keep Angie in your prayers today she is having the BABY!!!!!!!!!
Thanks
Monday, February 21, 2005 10:25 AM CST
Hi everyone!!
Sorry I haven't written in a while!!! I have been really busy!!! I have the day off today!!! YIPPEE!!!! I love when we have the day off!! I am spending the day at Angie's house today. We were going to go to the zoo but then the kids got sick so we thought it would be best to stay home and some other kids showed up to. Everything happens for a reason!!! Tonight I go back to my dad's house!! YAAAAA!!! I get really excited when I get to go back to my mom or dad's house!!! HI DAD SEE U TONIGHT!!!!! By the way, thanks so much for alway's wrtiting to me even though There's really nothing to check up on!! I love it when I still get notes from friends and family in the guestbook!!!! Thanks!!!!!!!!!!!!!!!!!!!! Well I am going to go help out Angie in the kitchen!! All my love!!!
Maryah
Sunday, February 13, 2005 7:53 PM CST
Hi Everyone!
It's Maryah! I can't believe it's already Sunday. WOW! I had a really fun weekend so it went by really fast. On Saterday I went shoping with my cousin and got some really cool stuff and Then today we woke up kind of slowly and then got ready and went to mass with my grandma and grandpa and then went to breakfast and then came home and just watched some TV and hung out because it was kind of rainy. I am really excited for Valentine's day tomarrow!!!!! We are going to have very little work and only some homework. Maybe not even any. That would be nice! I hope ya'll are doing well! Talk to ya later.
Maryah
PS. HAPPY HAPPY HAPPY VELENTINE'S DAY!!!!!!!!!!!!! THANKS FOR STILL POSTING MESSAGES ON MY WEB PAGE!! IT MAKES ME FEEL SPECIAL!!! THANKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Friday, February 11, 2005 7:36 AM CST
Hi!
It's Maryah! How is everybody? I am doing great! I have the day off school today because of confrences. I will probably go to Angie's house if it's ok with her. Right now I am just hanging out having some tickle time with mo mo. She is having fun! We are just taking the morning slow and then when we have a little breakfast I will get ready and we will head out. I am really enjoying school! We are starting to move on to the harder stuff now so I am spending a lot more time on homework but yesterday in math class we just we going over some of the stuff from last year and so most of it I got and some I needed a little help on but they were easy and I got them done in school so I didn't have any homework over the long weekend! YIPPEE!! Over the weekend I will be really busy! On Saterday Mo and I have dance and then I am going shoping with my cosin tiana (maybe). Talk to u later.
Maryah
Sunday, January 30, 2005 9:17 PM CST
Good Morning!
Hope that everyone had a fantastic weekend and starts the new week off well!
Maryah will return to Children's Monday afternoon for one more CT scan of her leg. Although we have reminded the docs that there is no use for an MRI and that it can be detrimental to the mechanical parts of her internal prosthetic they had ordered it as part of her tests Friday. Thank goodness that Zach and I decided to call the UofM for instruction from Dr. Thompson before allowing them to do the test. They were instructed not to do the MRI and instead to do a CT. Because Maryah had already had contrast for her chest, abdomin, pelvic CT they could not give her anymore on Friday. Therefore we will be returning on Monday at 4pm for another quick CT. Dr. Slomiany gave Maryah the "all clear" on Friday with all scans reading well. He will call us as soon as he gets the CT results tomorrow.
We will make an appointment within the next couple of weeks to meet with Dr. Thompson to discuss Maryah's first extension of the prosthetic. She has grown two inches since chemo finished and has now surpassed the five foot marker. She will surpass her old Ma pretty soon too! Probably not Dad but certainly she will tower over me. Good girl!
Well, I will post the results of the leg scan and update you when we get an appointment with Dr. Thompson.
Thank you always for visiting and leaving messages. Amazing that even after things have settled a bit, Maryah and I still visit the site daily and love to read our messages from friends and family! Thank you, thank you, thank you. You humble me!
Love and Blessings,
Rachel/Mama
Friday, January 28, 2005 2:09 PM CST
Hi Everyone!
It's Maryah. My scans went GREAT! They said everything was good. I am going back on Monday at 4:00 for a CT scane bacause I can't have an MRI or I will get zapped and I really didn't want that to happen and they couldn't do the CT scane today because I had already had one and they have to give me contrast and I couldn't have anymore or it could effect my kiddny. I am glad the day is almost over! I am at Angie's house because my mom had a problem at work and my dad had class so I wanted to come over here and hang out with the kids. THANKS ANGIE! Well I just wanted to let u know how the scanse went but know I should go. All my love.
Maryah
Monday, January 24, 2005 10:13 AM CST
Good Morning,
Here we are at the start of another week. Maryah and Mo are off to Dad's for the week. We had a fabulous week together even though the colds are hard to shake. Maryah got the worst of it. Mo only had a little cough for a couple of days and I did not have anything at all (Thank God). Maryah missed several days of school and then I finally brought her into the doctor on Friday to make sure she wasn't developing walking pneumonia. Doc felt she was doing just fine and thought we should let it run it's course. As of last night Maryah finally slept the entire night with no coughing fits. This was the first night since last Monday she was able to do that.
So now I will disinfect the house and hopefully get rid of any and all germs.
Maryah is back to school today and not looking forward to all the work she will need to make up after being gone. She will have to work double time since she will also miss Friday this week for scans. We will get started Friday morning early and be at Children's all day for Bone Scan, MRI and CT Scans. We will finish the afternoon with a visit to Dr. Slomiany. Hopefully he will tell us that all is clear and good!
We will keep you posted after we hear the results. Keep prayin'!
Hope everyone is well and that you have a wonderful week.
Love and Blessings,
Mama/Rachel
Saturday, January 22, 2005 12:40 AM CST
Hi!
How is everyone? I am really glad that it is Saturday! We are out at my A. Jo's house right now for are family celebration. All the Emersons will be here. We are looking forward to having all our loved ones out here together today! I hope everybody has a great Saturday.
All my love.
Maryah
Tuesday, January 18, 2005 11:49 AM CST
Good Morning!
It's the Mama. Our home computer is acting up...darn computers as they do sometimes! So...I told Maryah I would update the journal for her today.
I was so impressed this morning when Maryah came out with her hair styled. She had it spiked and sprayed, primped and she was proud. My baby (not so much a baby anymore) has hair on her again. She is obviously back to growing like a week because she only has about an inch to go before she passes me in height. I guess she is her Father's daughter!
Unfortunately the colds have made their way into our house. Mo and Ryah were both up with coughs last night. Hopefully we'll head it off at the pass and get rid of them quickly. The chiropractic helps get us through those icky colds and crud MUCH faster.
Maryah is scheduled for her scans next Friday, January 28th. She will start with MRI then Bone Scan and CT scan. After the scans we will meet with Dr. Slomiany and Kathy to find out if all is well and clear! We'll keep praying for good news. She's a very brave girl. Just think five more years of these scans, every three months. As if a mother doesn't have enough worries hey? I suppose it keeps me on my toes and constantly reminds me to never take anything for granted.
I hope that all is well for everyone and that you are all enjoying the new year. Hard to believe that January is already almost over.
Blessings to each of you and your dear families. We think of you often and will do a much better job of keeping the site updated.
Love and blessings,
Rachel (Mama)
P.S. CONGRATULATIONS TO MARYAH'S GOD FATHER UNCLE "GOO GOO" SAM AND WIFE JESSICA ON THE BIRTH OF THEIR NEWEST ADDITION:
ALISON MAEVE BORN: JANUARY 3RD 2005
WE LOVE YOU GUYS!
Saturday, January 15, 2005 12:57 AM CST
Hi Everyone!
It's Maryah. HAPPY SATERDAY!! I am really excited that it is Saterday! I had a very very long week! How is everybody's Saterday going? Mine is going great! This Morning we woke up and we all took baths and showers and then mo and I got dressed in out dance clothes and my dad got dressed and then we went to my mom's house to get our dance shoe's and then we went to dance and then we went to Brueggers bagels for breakfast/lunch. Well I am going to hang out with my dad now. All my love.
Maryah
Saturday, January 8, 2005 7:00 PM CST
Hi!
It's Maryah. How is everyone's weekend going? Mine is going great! This Morning we went to mo's dance class and I got to help out so that was preatty cool! I haven't gotten to dance in a really long time so that was AWESOME!! Also this morning for the first time I got to do my hair, I used a water bottel and I wet it down a little bit and then I kind of like spiked it and then put a clip in it and it looked awesome! The next time I do it I will take a picture and post it on my web site. Right now I am at Angie's house because Mark and Angie just needed a night out before the baby was born so we are going to spend the night over here while they are out having a good time. It is really fun but also kind of loud and a lot of arguing so I think right now they are all getting ready for bed. I am going to be going to bed at about 8:30 or 9:00. When ever my mom say's so. For dinner we had pizza! Oh so good. It is so good! I loved the journal my dad did on January 5th! THANKS DAD!! I LOVE U!! I am really excited to go back to my dad's house on Monday. I am alway's excited when I get to go back to one of my parents house!! How was everyone's Christmas ( and New Year)?? I had a great Christmas and New Year!! On New Year's day I woke up on New Year's at my friends house and then my dad got me and we hung out together and had a great New Year! Well I am going to head out. All my love! God Bless!
Maryah
Wednesday, January 5, 2005 9:19 AM CST
...it all started. Since last year was leap year Jan. 5 fell on a Monday. Maryah had experienced pain in her right leg just above her knee for about a month. Rachel and I attributed it to growing since I too had them in both of my legs in that spot while growing to 6'3" when I was an adolescent. Maryah is very tall soo...
However, that Monday came and she was crying so we brought her in to see Dr. Jaeger at Central Pediatrics (who we love for her quick action) for an examination, followed by an x-ray, followed by an MRI that afternoon. Later on that evening I drove back to pick up the MRI results and sat in the car looking at the 101 different pictures of this "thing" in Maryah's leg. The next day Maryah went in for a "bibopsy" (biopsy) with Dr. Roby Thompson - one of the best - which confirmed this "thing" was Ewings sarcoma -a rare form of bone cancer. With the support of family and friends - especially Elaine "Nuna" Allen (my mom) - we set out to "walk" through this together. Wednesday came Maryah had more tests; she had a bone scan, CT scan and a chest x-ray. Maryah was very strong through this whole process. She knew her hair would begin to fall out so on Thursday she did not have any appointments and her mom and I said she could do anything to her hair...so she put dark red streaks in and she looked great! Friday she had her port put in and while she was under they did a bone marrow aspiration. Saturday we got the call saying it had NOT spread to her marrow!
Here we are 14 rounds of chemo later CANCER FREE with a smile that doesn't quit, a partially new leg, two inches of hair (plus eyebrows and lashes) and many rich experiences. I used to say to Maryah during the hard times that "God is training you for something wonderful". Thank God we ALL have a piece of that wonderful to hold onto.
Dad
Maryah's "ringman" during her 14 round bought against the Big "C" during the 2004 heavy weight championship fight. Maryah is the last one standing! She won by TKO. No autographs please.
Saturday, January 1, 2005 12:43 AM CST
Today is January fifth and it marks
Hi!
HAPPY NEW YEAR!!! How is everybody's New Year going?? Mine is AWESOME!!! Last night I went and spent the night at my friends house and we stayed up and watched the count down. It was really cool! There were three girls there (all my friends) and one of them Sara brought though's little blow thing's that u have at birthday partys when the birthday girl or boy blow out their birthday candels so when the count down was on when it got to zero we blew them and it was really cool! anyway's I had a really good time. Well I should go now. All my love.
Maryah
Friday, December 31, 2004 11:58 AM CST
Hi!
It's Maryah. How are all of u?? I am at Angie's house right now. We just got back from the MN zoo. It was really fun! We went through the tropic's tral and then we went to the dolphin's show and we got wet so all the little kids thought that was the coolest part of the hole thing. It was preatty fun! Now I am just waiting intil my dad can get off the phone so I can call him and let him know that I am ready for him to come and get mo and I and then I will go home and just hang out for a little bit and then I am going to spend the night at my friends house. It sould be fun. Well I know this isen't the longest journal I have ever done but I should go amd help out with the kids. All my love.
Maryah
Tuesday, December 28, 2004 3:12 PM CST
Hi,
It's Maryah here. I looked at my web page on Christmas and it said that 31,992 people had checked it and when I just checked it now it said there were 32,106 people who had checked in on me so I just wanted to say thanks for checking in on me! It makes me feel really good to know people are thinking of me. I am at Angie's house right now and I am helping out with the kids. For lunch we had another one of my fav's. It's called the hevenly hot dish of happines. There are noodels and then u cook some hanberger and then u add the cream of mushrum soup and put it in the oven. MMMMMMMMM! SOOOOOO GOOD! I am getting really excited to go back to school! School is never fun but u can kind of start to miss going after a while and I have been out of school for a very very long time! Coming up on January 5th will be a one year thing since this all started. I am really really really really really really really (u get the point right?) glad I am done with chemo and all that stuff! Well I am going to head out for the night. All my love and God Bless!
Maryah
Tuesday, December 28, 2004 3:12 PM CST
Hi,
It's Maryah here. I looked at my web page on Christmas and it said that 31,992 people had checked it and when I just checked it now it said there were 32,106 people who had checked in on me so I just wanted to say thanks for checking in on me! It makes me feel really good to know people are thinking of me. I am at Angie's house right now and I am helping out with the kids. For lunch we had another one of my fav's. It's called the hevenly hot dish of happines. There are noodels and then u cook some hanberger and then u add the cream of mushrum soup and put it in the oven. MMMMMMMMM! SOOOOOO GOOD! I am getting really excited to go back to school! School is never fun but u can kind of start to miss going after a while and I have been out of school for a very very long time! Coming up on January 5th will be a one year thing since this all started. I am really really really really really really really (u get the point right?) glad I am done with chemo and all that stuff! Well I am going to head out for the night. All my love and God Bless!
Maryah
Saturday, December 25, 2004 12:18 AM CST
MERRY CHRISTMAS!!
Hello, It's Maryah here. How is your Christmas going with all your friends and family? Mine is going great! We are hanging at my A.Jo's house this year. It is preatty darn fun! For my present's I got a Make Up kit, clothes, a new jaket and scarf and hat to go with it, a movie, a really cool game, and an art book. You can make really cool swoorly things with it. That is all from my mom's side of the family except my dad and A. Jo got me clothes and all of the other stuff was eather from my mom or santa. My grandpa Denny is coming out for a little while and then for dinner we are going to have stake and other stuff but I don't know what. Well Hope u all have an awesome Cristmas! All my love and God Bless.
Maryah
PS. Please keep Liz Kaiser out new friend in your thought and prayers if you would like to visit her web page here u can, it is
www.caringbridge.org/mn/lizkaiser
Wednesday, December 22, 2004 8:23 AM CST
MERRY CHRISTMAS!!!!
We wish you holiday blessings from our home to yours. Hoping that all of our dear friends and family enjoy this blessed season and have a wonderful new year!
This week Maryah is busy making Christmas gifts, spending time helping Angie at the daycare, and waiting patiently with Morgan for Santa to visit this weekend!
So much anticipation...it is fun! This year will be the first in many that we will attend midnight mass. I am so looking forward to that peaceful dark church lit by candlelight. It is such a brilliant reminder of the reason for the season. Can't wait to share that with my girls again!
I hope that you enjoy your traditions and the love and warmth shared by spending time with family and friends.
Love and Blessings,
Rachel/Mama
Sunday, December 19, 2004 5:06 PM CST
Hey Everybody!
How are you?? I am having a blast off of school. Tomarrow I get to spend the day with my dad and I am really excited about that. Today I had a really good day! I woke up, Had brekfast, we went and ran a few arrands and then came home and mo took a nap and then we watched a movie had a little dinner and now I am doing this. It ia really cool to think that I don't have to wake up at 7:00 tomarrow and go to school. I'm loven it! Well this isen't the longest journal ever but I am a busy girl these day's. All my love and God bless.
Maryah
Friday, December 17, 2004 11:32 AM CST
Hi there! Sorry it's been so long since the last update. I think everyone I know including me is caught up in the typical hustle and bustle of the season.
Time to sit back and enjoy in my opinion. Too much stress in shopping, decorating, etc. We lose the true meaning sometimes.
Maryah is enjoying her last week of school before her Christmas break. It was last year, the day she was to return to school from Christmas break that we took her in for the leg pain she was experiencing. Almost one year ago...hard to believe isn't it?
Miss M sang in her school Christmas concert Tuesday night and did a fabulous job. She is celebrating at her class Christmas party this afternoon and next week will be off to Angie's to help with the little ones. Mo will be so happy to have her sister with her. Angie, I'm sure will have a good helper in Maryah.
I want to wish you all a very Happy Holiday. We are almost to the new year and I am praying it is a peaceful one for all of you. Thank you for spending this past year with us. I know it seems boring to read about all this "normal" stuff we are journaling on but it is such an overwhelming blessing for me to be updating on the normal activities of a healthy child. Keep visiting, keep leaving messages. We love to hear from you and it gives a sense of peace to know you are still out there.
Love and Holiday Blessings to all,
Rachel/Mama
Tuesday, December 7, 2004 6:52 PM CST
Hi all!
Maryah and Mama here. We thought we would do a journal entry together to update everyone on the latest. Guess what? Maryah had her port-a-cath removed on Friday. The surgery lasted only about 30 minutes and went very smoothly. When Maryah came out of surgery I was walking along side her bed as she was wheeled into recovery and she yells "Hey Mom" when I responded she pulled her hand out from under the blanket and there she was holding a zip lock bag with her cleaned port! What an accomplishment. We will hang the port on our Christmas tree this year in remembrance of what this last year has held for us. Maryah recovered well.
We are still arguing about the importance of getting back to walking normally...aren't we Ry? YEAH MOM!!!! :(
I get a little grief from her daily and a few dirty looks now and again but I know she knows I only ride her rear end because I love her and want her to get back to the things she loves the most...like dancing with her friends at DDs.
We would like to ask prayers and maybe some encouraging messages for our friend Liz Kaiser. Liz is the daughter of Maryah's third grade teacher, Mrs. Mihm. She was also diagnosed (just recently) with a bone sarcoma. She is being treated at the UofM. She began chemo treatment on Monday. Please pray for her speedy recovery and visit her website at www.caringbridge.org/mn/lizkaiser. I will also add the link down below.
If you did not already know Maryah is also featured on the radio station Cities 97 (FM 97.1). She is doing a spot for Make-A-Wish, Stories of Light. This is the big fund drive that Clear Channel Radio does for Make-A-Wish. Listen for Maryah. I have heard the spot a couple times and it is pretty cool. There is also a tree at the Mall of America representing Maryah's wish to raise funds for Make-A-Wish. Maryah and I have dedicated some volunteer time as well to help Make-A-Wish. You can also take a look at www.wishmn.org to read Maryah's story under Stories of Light.
Okay...we are off to check homework, study spelling words and watch Mo give us a fasion show in her high heels leotard. She joined the dance team at DDs last week and she is really excited to show her dance moves.
Ry and I wish you a good evening and blessings in this holiday season.
Love to all and Maryah says "God Bless",
Rachel/Mama and Maryah (Mo too)!
Sunday, December 5, 2004 8:04 PM CST
Hey!
What's up?? Well my dad told a story by Hannah (My aunt) and if you didn't get a chance to read it I would really suggest you go back and read it. It was really cute! It was especially cute because it was writen by a 8 year old. well I don't have time for a really long journal because I am going to bed but I hope you all enjoy reading Hannah's story! Talk to ya'll later! God Bless!
Maryah
Tuesday, November 30, 2004 8:50 AM CST
Hello Family,
Yesterday Neil (Maryah's grandfather) shared with us a story that his eight year old daughter Hannah wrote for a contest. The contest was held a few months ago when Maryah was still battling and each entry was to be about a princess in your life. Hannah chose to write about Maryah.
"My name is Hannah Tift. I am 8 years old and live in Stillwater Minnesota. Maryah is my niece and she is beautiful, like her dad, my big brother. Maryah is ten and we have lots of fun playing make-up and dress up and Frisbee and catch. We both love Chinese food and like to play with my kittens, my fish and my birds. When I was younger, she taught me how draw a cat.
Maryah has always had really beautiful long hair that hangs downs her back, like Repunzel. But now she has no hair at all. Sometimes she wears a hat, but she is still beautiful even when she is bald. You can be a princess without hair.
We love to go swimming together but since last winter she has been too sick to do any of these things with me.
Maryah has bone cancer. She had to have chemotherapy for over six months and then they took the bone out of her right leg and knee and put in a metal bone. I like to help her get into her wheel chair when I can.
Sometimes I get sad because she is sick.
The doctors say she is getting better. I think the reason she is getting better is because she has such a wonderful personality and her spirit is so strong that no body can stop her. She says that God has special plans for her. I have a piece a paper that she wrote saying nobody can stop you if you really want to have fun. And sometimes I get like that and really want to have fun with her.
I get to see her more now that she is feeling better and I look forward to swimming with her when she is stronger."
Saturday, November 27, 2004 6:08 PM CST
Hey Everybody!!
Sorry dad I got rid of your journal entery so soon but I haven't writen one in a while. How is everybody doing?? Happy late Thanksgiving from me!! I had a great Thanksgiving!! I got a couple presents and who dosen't love presents?? So that was cool. Other wise I had a really good time just with my family.
For dinn we had turkey, stuffing, potatos and vegie's. It was really good!! MMMMMM! I wish we could have that every night for dinner!! I was really really excited this morning when I woke up and there was snow on the ground!! Right away we went out to play!! Ii is nice to have a change in wether but most people don't like the snow but this is like the coolest thing ever to wake up in the morning and see snow on the ground!! WOW.
Ok well I am going to go now!! All my love!!
Maryah
P.S. A side note from the Mama. We are trying to get Christmas cards out and would like to send one to all of our friends out there. One problem... I don't have everyone's address. Could you please do me the kind favor of e-mailing your home addresses to my e-mail address at rachel_t75@hotmail.com. I would greatly appreciate it. We'd like to share one of our FL pictures with all those of you that were along for the journey this year.
Thanks a bunch!
Mama/Rachel
Saturday, November 27, 2004 6:08 PM CST
Hey Everybody!!
Sorry dad I got rid of your journal entery so soon but I haven't writen one in a while. How is everybody doing?? Happy late Thanksgiving from me!! I had a great Thanksgiving!! I got a couple presents and who dosen't love presents?? So that was cool. Other wise I had a really good time just with my family.
For dinn we had turkey, stuffing, potatos and vegie's. It was really good!! MMMMMM! I wish we could have that every night for dinner!! I was really really excited this morning when I woke up and there was snow on the ground!! Right away we went out to play!! Ii is nice to have a change in wether but most people don't like the snow but this is like the coolest thing ever to wake up in the morning and see snow on the ground!! WOW.
Ok well I am going to go now!! All my love!!
Maryah
Thursday, November 25, 2004 2:52 PM CST
We want to extend love and peace to you and our growing family over this holiday season. We are thankful today and every day for Maryah's health, for her continuing recovery, and for your love and support.
Maryah is off of her crutches! She is now showing her strength to walk upright even though she cannot fully bend and straighten her leg. Through prayer, sheer determination, and cheering from others she'll be dancing with her sister soon!
Maryah is also scheduled to get her port removed next Friday. Her port is the bubble under her skin that is connected to a small tube that leads to her superior vena cava where the doctors injected chemo. Others who have gone through this experience have removed it, cleaned it, then have hung it from their Christmas tree. Maryah may decide to do the same in recognition of how she has come and as a way to thank God for our "port" to life through His son.
We love you. God bless...
Dad
Monday, November 22, 2004 9:18 PM CST
As we approach this holiday of Thanksgiving I am reminded of all we (I) have to be thankful for. I am ever so thankful for Maryah's health and recovery from this brutal disease. It is such a blessing to watch her progress in school, to watch her hair growing back and to watch her work so hard to get her leg in working order. I am also thankful for the many, many people who rallied together to help and support our family in so many ways this past year. I have never experienced such an outpouring of kindness and selfless giving. I am also touched and thankful for the many young people we have met this past year during Maryah's journey. Some of those people still here in the physcial sense and some here in spirit. Thankful to the many mothers and fathers and especially other children that have come here to this site, called, e-mailed their support and concern for Maryah.
I could certainly go on for a good deal of time about the many things I am thankful for but I think we can all sense we are in the same boat this Thanksgiving.
I wish you all a beautiful holiday filled with love and peace. We will be saying our thanks for each of you at our Thanksgiving table this year.
Love and Blessings,
Rachel/Mama
Wednesday, November 17, 2004 8:03 PM CST
Hey Everybody!
How ya'll doen'?? I am AWESOME!!! I am at my dad's house tonight and I took a bath and I washed my peach fuzzzz on my head for the first time in a really long time and it felt really cool and soft. I am having a blast at school. We are doing a lot of subject's that I really really like!! We are having a math test on Friday and tonight for homework we had to do 3 pages in our math book. It was easy but it was a lot of homework. We had to do that a letter for Social studies and at least one more page and we have already done one. There was a lot of writing tonight. Oh I forgot one thing we had to do science and you had to write the answer's to them. well I am going to go to bed because I am really tired!! I hope all of you are doing well! GOd Bless.
Maryah
Monday, November 8, 2004 6:40 PM CST
Hello there!
We are home from our FABULOUS trip to Isla Morada, FL. We had such a whirlwind trip. Lots to do and see.
Wednesday we spent some time finding our way around. Spent some time in the pool and in the hot tub before bed.
Thursday Maryah and I swam with the dolphins. Maryah had a BLAST as you can see from some of the new pictures. We spent most of our day at the Theater of the Sea watching the dolphin shows, riding the bottomless boat and sea lion shows. Such a fun day!
We spent Friday in Key West. We saw the sights and then went for a ride on a Catamaran. We attempted some snorkeling but we all chickened out except for Auntie Jo Jo due to rough waters on the reef. It was a fun ride and beautiful sights.
Saturday was the wade with dolphins and Mo got her opportunity to get dolphin kisses and make Stormy (the dolphin we waded with) sing to her. She loved it! Maryah had another good time with the dolphins. We all did.
We spent the rest of Saturday around the beach and pool enjoying the beautiful weather and sunshine.
Sunday we enjoyed breakfast in Key Largo and then made our way to the airport to come home.
The limo ride to and from the airport was magnificent and Maryah was smiling the entire trip!
I hope you enjoy the pictures and I will leave the rest of the details for Maryah to journal.
Lots of love and blessings,
Rachel/Mama
Tuesday, November 2, 2004 3:32 AM CST
Good Morning!
It is very early Tuesday morning. I have been up packing and preparing since about 1:30 this a.m. Unfortunately I don't think Mothers ever really sleep normally after children are born.
I like to think that I am organized enough to pack the night before a trip but I think I needed a little extra time to get this one ready. So here I am getting the site updated with all the info for our BIG TRIP TO FLORIDA!!!!
Maryah and Mo are very excited and raring to go. We will be leaving our house by Limousine on Wednesday morning at 5:15. We should arrive in Miami about 11:45 or so. We will have a car to drive to Isla Morada (near Key West). Wednesday is our day to venture out. Thursday Maryah and I swim with the dolphins at Theater of the Sea. Friday we will be shopping fools, beach bums and sea shell collectors. I am sure seafood will be calling our name for supper. Saturday it's Mo's turn to wade with the dolphins. We all get to join her for that venture. We have the rest of the day free to enjoy and sight see before we have to get ready to come back on Sunday.
It will be a FABULOUS adventure, one that Jo and I are really looking forward to sharing with the girls. This will also be the first trip my Sis and I are taking together as adults. What fun for all!
We will take a lot of pictures and get them out on the site as quickly as possible so all of you can enjoy the fun as well.
This was Maryah's wish, the dream that came to her mind on many occasions when she felt sick, when she felt pain or when she was just sick and tired of thinking about cancer. She finally gets to live her dream. She has earned it, she deserves it and I can't wait to enjoy the smiles and the laughter this trip will bring for her.
I mentioned to Jo that I got to experience Maryah's first trip to the ocean at 18 months, her face was priceless. She ran into the rolling waves and sat down in the sand with salt water rolling onto her lap. She was fully clothed in courderoy overalls, shoes and jacket (it was September). She has never smiled so adoringly and her appreciation for the simple beauty of her surroundings is what makes her so special. I will get the opportunity to share that experience with Morgan on this trip. Her first trip to the ocean! I can't wait to see how "the spark" reacts on her first view. My dreams are coming true right along with these girls and I can't begin to tell you how blessed I feel.
This will be a trip to remember forever and we are glad you all can share that with us! We will update as soon as we are home and settled.
Love and Blessings for a safe and happy week!
Rachel/Mama
Sunday, October 31, 2004 4:44 PM CST
Hey Everybody!
How ya'll doing?? I am doing great!! I am so excited I decided to go trick-or-treating!! I am going to be a witch. I am going with my two cousins Tiana and Bria. They are really cool!! I am looking forward to wednsday. Going to Florida swiming with the beatiful dolphin's it's soooo excited!! On Wedsday we will get there and see where the day takes us then on Thuresday we are going to swim with the dolphin's and on Friday we are free and we want to go shoping go to the beach to colect sea shells then we might take a little nap and go to dinner and then just hang out on the beach and go to bed. It should be fun!! Also another really cool ting is the limo. Oh my gosh I am so excited! It will be AWESOME!!!!!!!! I was telling mo that I am ten and I haven't ever been in a limo and then when she's in high school and there talking about prom and the limo she will be able to tell all her friends that the first time she ever went in a limo was when she was three. You can tell she will be one of the popular kids!! Well I am going to head out and go get ready for a SPOOCY night. All my love to all of you!! God bless!
Maryah/Ryah
Saturday, October 30, 2004 10:59 AM CDT
Hey Everybody!!
How ya'll doing?? I am at my auny Jo's house right now. I am going to spend the night out here with her while my mom go's to a wedding. I am having fun so far! We are planing on staying up late watching scary movie's and carving pumpkins. Shayna and mo are being CRAZY doing thing and I am hanging out with my mom and aunty Jo before my mom leaves. I am having fun in school!! Yesterday we had a Halloween party with are cinder budy's. They were so cute in there little costumes!! My little cinder budy was an angel for Halloween, she was really cute!! Well I better go now. All my love!!
Maryah
Wednesday, October 27, 2004 6:28 PM CDT
Hey Everybody!!
How y'all doing?? I am doing great!! I walking around with only one cruch so I am super excited! I am actually putting wait on my leg. I remember when I was in a wheele chair and could put any wait on my leg at all and now look at how far I have come. I am having a BLAST in school!! I took a test to see if I needed to take title one because I was out of school for so long and I pased the math test so I am really excited! Today was picture day and I have a feeling they turned out really good!! For my back round I had Anber and I war a cream colered shirt with roses on it and a pare of jeans and dock martin shoe's. It was really cute. What have you all been up too?? I have told you all that I have been doing what about you?? Well what ever you have been doing you can tell me latter. All my love to all of you! God Bless.
Maryah
Monday, October 25, 2004 9:17 PM CDT
Good Evening!
Welcome to the spooky week before Halloween. Maryah will have more time to journal this week. She got a bit busy with some homework she had to catch up on. Big 5th grader now...lots of homework. After Maryah's conferences we are even more proud as she is doing a really fabulous job in school even after missing a half of a year in 4th grade.
We are on the countdown to Florida with only a little over a week before we leave.
The limo will pick us up at the house next Wednesday and then we will be on our way. Maryah swims with the dolphins right away on Thursday and then we all get to wade with the dolphins on Saturday...Mo's big day! It's getting so exciting that we are all practically jumping out of our skin.
"Grandma" Teri sent Maryah a picture of her swim with the dolphins and Maryah was even more excited after seeing that. Thanks Gram!
We have lots to do to get ready for Halloween and our trip so it will be a busy week but I promise we'll make time so Maryah can sit down at the computer and do a journal entry. I know everyone would much prefer to hear from the lady herself!!! Don't worry, I prefer when she journals too.
I hope everyone has a spooktacular week and a raving fun Halloween weekend.
Lots of love and blessings,
Rachel/Mama
Sunday, October 17, 2004 9:48 AM CDT
Hey!
how are you all?? Well I am doing GREAT! Cancer Free! Yippee! YAAAAAAAAA! I am really excited! No more chemo, No more low counts! It's all good! It has been really cold this weekend! Freazzzzzzzzzzing! Yesterday we all went to the pumkin patch and today we are going to go to my aunty Jo's house! That's alway's a nice way to end the weekend! I love going out to her house! Mo (Morgan) also loves going out there to see her little cousin Shayna! I am loving my new school! I know a lot of new kids already! They are very nice! My new friends are Maddie, Lucy, and Sara but Sara is not new. She has been my best friend for a long time! It is a lot of fun there at St.Luke's! Halloween is coming up! Ya! I am really excited! I'm trying to determine if I am too old to go out this year or if I should dress up. What do you guys think?? A lot of my friends are going so I am thinking I should too! I don't know! Morgan wants to be a witch for halloween this year. I don't know though. Yesterday she said she wanted to be a duck know she wants to be a witch. She dosen't know what she wants to be. Well I better get a move on! All my love!
Maryah
Friday, October 15, 2004 10:10 PM CDT
Hello and Happy Friday!
It is such a nice Fall weekend. It is not too cold but just cold enough for a cozy sweatshirt and blankie and a good movie or two. The girls and I spent our Friday evening doing just that...cozying up and watching a good movie.
Maryah spent the day at Children's today where she had a CT early this morning and then a bone scan to follow. After the bone scan we stopped for a bite to eat in the good ol' Children's cafeteria where we saw many of our "hospital friends". Maryah then met with Dr. Slomiany where we found that her scans came back wonderfully and she was free and clear of any further "cancer/tumors". Blood counts came back nicely and Maryah was one of the lucky few to receive a flu shot. Although Zach, Mo and I should also have one, we will be unable due to the serious shortage. I feel for those out there who truly need it and won't be able to get it.
Maryah was a champ all day once again! She even made it through an IV poke in her arm instead of accessing her port. They felt this was necessary for the contrast she would receive for the CT. We also determined that sometime around Thanksgiving they will remove Maryah's port-a-cath and any further blood draws will be done again through the arm. The port is a source of infection so we want to remove it as soon as possible.
We have some evidence of hair returning. There is some peach fuzz growing on Maryah's head right now. In a few more weeks there should be more visable hair growth.
We are on our way. The continued prayers are much needed and appreciated. We now focus our prayers on continued health and a cancer free body for Maryah. We are ever so thankful for her quick recovery and for all of those that supported her and us all through this time.
There is a great deal to be thankful for but mostly I am just thankful that today's tests brought good results and that my baby is CANCER FREE!!!!!
Love and blessings to all,
Rachel/Mama
Wednesday, October 13, 2004 6:21 PM CDT
Hi everyone!
Today Maryah had her appointment with Dr. Thompson. We were in and out of the appointment in less than 15 minutes. Dr. Thompson believes that Maryah should continue to wear her Dyna Splint brace to continue the extension of her leg. He does not feel that Physical Therapy will be productive for her any longer and so we will utilize the brace not just at night while Maryah sleeps but while she is up and about during the day as well. We will work with the Dyna Splint rep on Friday (hopefully)so he can repair the brace we currently have and re-fit to make sure it is still appropriate for Maryah.
Dr. Thompson also felt that Maryah is not in need of having the new leg lengthened. He feels she can wait until after her knee is extended.
Maryah will have to work on strengthening her quadracep after the extension is complete.
With all these elements in place Maryah should be walking, even running again very soon.
I am relieved that there will be no invasive procedures right now to correct the knee.
As usual Dr. Thompson was very short and to-the-point, no one can ever accuse him of being ineffecient.
Looks like we will be able to eliminate the MRI on Friday since Dr. Thompson doesn't feel he or Dr. Slomiany will get the imaging that they would need from the MRI. We will go ahead with the CT and bone scan however.
The CT will be of Maryah's lungs, this is where Ewings typically reoccurs. The bone scan will cover all of her bones.
Well, that is it for now. We will update you again after Friday's tests.
Love and Blessings,
Rachel/Mama
Sunday, October 10, 2004 10:26 PM CDT
Hello out there!
It's far and few in between when we are journaling here at the site lately. I apologize for not keeping the site updated more often. Things getting back to "normalcy" seem to keep us running almost as much as we have over the past ten months.
This week holds the hope of a new "plan of action". On Wednesday I will take Maryah for a visit to Dr. Thompson. He will assess the situation with her knee and determine our plan going forward. I hope to hear from him how he thinks Maryah will recover and how quickly.
As I mentioned in the earlier entry Maryah also has a line up of tests on Friday at Childrens. Unfortunately Maryah will miss another day of school but in comparison to last year...I think she can manage!
Well, it has gotten late before I realized it and now it is time to get some sleep.
I hope that you all have a blessed week and enjoy our beautiful Fall weather.
Thank you for continuing to post messages, it is still very comforting to come here and read them.
Love and blessings,
Rachel/Mama
Sunday, October 10, 2004 10:26 PM CDT
Hello out there!
It's far a few between when we are journaling here at the site lately. I apologize for not keeping the site updated more often. Things getting back to "normalcy" seem to keep us running almost as much as we have over the past ten months.
This week holds the hope of a new "plan of action". On Wednesday I will take Maryah for a visit to Dr. Thompson. He will assess the situation with her knee and determine our plan going forward. I hope to hear from him how he thinks Maryah will recover and how quickly.
As I mentioned in the earlier entry Maryah also has a line up of tests on Friday at Childrens. Unfortunately Maryah will miss another day of school but in comparison to last year...I think she can manage!
Well, it has gotten late before I realized it and now it is time to get some sleep.
I hope that you all have a blessed week and enjoy our beautiful Fall weather.
Thank you for continuing to post messages, it is still very comforting to come here and read them.
Love and blessings,
Rachel/Mama
Wednesday, October 6, 2004 8:22 AM CDT
Good Morning!
I have noticed that Maryah is not updating the journal. Busy girl! Apparently school and friends and being back in the mix of things are keeping her going!!! That is a great thing.
There is nothing new healthwise with Ms. M. We are scheduled on October 15th for scans that will let us know how she is doing. We are working on our options for rehabiliating her leg/knee. I will keep you updated on that end.
Maryah and Zach had a lovely time in California. They spent time at the beach and in the warm sunshine. They also spent a good deal of time with family. Maryah hasn't seen this side of the family since she was a small girl so I am glad she was able to reconnect. I know she had a fabulous time and talked a lot about how nice everyone was.
I hope that she will remember her trip for a very long time.
Only a few more weeks before we are off to the Keys to swim with the dolphins. That will be very exciting also and I know she and Mo are both really looking forward to that adventure. Should be lots of fun.
I hope everyone is having a fantastic week. We are glad you are here checking in and leaving messages. It's nice to visit and see your notes.
Love and Blessings,
Rachel/Mama
Hey everyone!
Sorry I haven't been writing! I have
been really busy with school. What have you all been doing?? Me just school... and some more... and some more. Lot's of work! Well I am off to bed for the night. All my love! thanks for writing to me!
Maryah
Friday, October 1, 2004 9:11 AM CDT
Well, Ms. Maryah is off to California with Dad and the rest of the Allen family. Cousin Rob is getting married tomorrow and Maryah is pretty excited for another family wedding. The weather looked like it would be just perfect in the mid 70s all weekend.
Maryah and I joked yesterday morning while getting her ready to leave that she had better get to the airport early because she would set off every metal detector in the place with her bionic leg. I am anxious to hear from them tonight and find out how it went.
Mo and I are having a grand time together. We will go this weekend to visit the dolphins at the MN Zoo. She gets so excited about swimming with the dolphins when she sees them. She likes to get popcorn and watch the dolphin show. That will be our special outing this weekend.
I hope that everyone is having a great week and hope that you have a fantastic weekend.
Love and Blessings,
Rachel/Mama
Tuesday, September 28, 2004 8:27 PM CDT
Thanks to Auntie Jo Jo for updating the website while we've been slowing down a bit. Although this has been such a fantastic outlet for sharing feelings, thoughts, news, etc. It was nice to take a short break from everything cancer. I know that might sound selfish but I really needed to just live "normally" for a bit.
I am glad to be back and extremely glad to see that none of you have given up on us and still hold strong to visiting and leaving your kind and encouraging words. It is still such a blessing and feels so familiar to me. It is like coming home!
Maryah has been doing amazingly well. There was a platelett transfusion late last week but as of Monday counts are climbing and starting to sky rocket. Maryah feels well and she seems to be taking all in stride. I am so proud of her. She had four tests at school today and seemed to just roll right through them. It's so amazing for me to observe the transformation in my little girl. Her focus and dedication are strong and inspirational.
We discussed a plan with Dr. Slomiany and Maryah will be going in October 15th for her first check up and series of tests. She will have an MRI, CT and Bone Scan on this day. They will do this periodically over the next year to make sure there is no reoccurance. In four to six months they will remove Maryah's port-a-cath from her chest and she will have blood draws from her arm as we all do (bummer)! There won't be frequent blood draws like there are now due to the type of cancer she had. Her blood is not likely to tell us much in the future.
On Thursday Maryah and Dad leave to go to California for cousin Rob Allen's wedding. They will be gone through Monday. Maryah is really looking forward to the trip. Morgan is a bit sad that she is not going but glad when we talk about what fun things we could do this weekend together.
Although I feel quite restless and feel a need to be productive in other ways, I feel very good and extremely relieved that this has come to an "end". I will pray that this is truly the "end".
The first time that Maryah received chemotherapy I cried tears of sadness, sobbed for her. I watched poison enter her small, fragile body. This baby that had grown inside of me for nine months was now on the way to suffering and pain. On Friday, September 17th I watched Maryah receive her last round of chemotherapy and I cried only I cried tears of joy. The suffering is over and I can watch my daughter play and be a child again. What a blessing.
Love and blessings to all,
Rachel/Mama
Friday, September 24, 2004 1:30 PM CDT
Hello again...Auntie Jo Jo here again. I thought since so many people stop by to say hello, I would share a bit more of the family spirit through the eyes of someone close to Maryah but not living with her.
I like to believe that, in this journey we all have been traveling in, with Miss M., Rachel, Zachary, and Morgan...I (we) have come away as better people. Each day I give thanks to God for my family and friends. How I have been blessed with each of you who have touched this journey in one way or another. We have all changed because of this precious girl's life and love. Whether we decide to take that onto each day and remember it, is a personal choice.
I choose to "open my eyes in the rain, and take in the beauty" even a gloomy day brings! I will continue to use Maryah's lessons of life in all I do from here and after. I again thank this beautiful niece of mine for shining a light into my heart and awakening me to possibilities of always helping others and believing each day is a gift!
God Bless!!
A bit of a poem from... Beautiful Rain by:
Joseph J. Mazzela
When life rains on you, don't hide your head. Turn your face up to the sky instead. You may get wet, but at least your eyes will be open to see the beauty and goodness that God gives us in bad weather as well as fair.
Wednesday, September 22, 2004 2:13 PM CDT
Good afternoon all!
I know Rachel, Zachary, and Maryah have a busy week...so I
thought I would try some inspirational poems for the day. One given earlier in the year by cousin Sarah! I hope all is well with each of you. As you read these poems, you may notice this wonderful young lady you have been
following, has lived up to each of these inspiring words!
As her aunt, I have had the experience of being up close and personal with this disease. If Maryah has taught me once, she has showed me a thousand different ways to live the way I was meant to live...and that is full of life and love!!!
Thank you Maryah, my sweetness, for opening my eyes, as well as many others to viewing life as a GIFT!!
Auntie JoJo/ Joanne
The Big "C"
The Big "C" I heard someone call it.
Another just whisper the word.
So I am giving that letter new meaning and refuse to give into fear.
By reclaiming the power for you and me.
And by saying these words loud and clear...
Let the "C" Be for "Cure" and Compassion"
Let it stand for "Candles" we light,
And a "Chorus" of voices shouting
"You Can"
To all who will take up this fight.
Let the "C" be for "Cash Contribution"
(Credit or Check will work too)
Let it stand for "Commitment" -
"Checkups" & "The Children Counting on you"
Let it mean that we know our "Creator" is beside us...
To call on his strength - his love and to "Celebrate" every new day.
To everyone facing this "Challenge" I say it is a fight we can win.
Tell all who will listen that, starting today...
The "C" is for "Courage" my friend...
~Author Unknown~
What Cancer Cannot Do:
It cannot cripple love
It cannot shatter faith
It cannot corrode hope
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
Friday, September 17, 2004 7:27 AM CDT
LAST DAY OF CHEMO!!!!!!
What a day! We thought it might never come but here we are this fine Friday morning. Cool, crisp air and bright sunshine.
We have so much to be thankful for today and everyday but I am especially grateful to Maryah for making this seem so effortless. Of course it also made things a world easier to have all of our family and friends supporting us the whole way through.
Maryah is so very excited about this day. We will bring music to the clinic and Nuna made cookies for the staff so it seems more a celebration than a trip for chemo.
Can't wait to start planning our "chemo is finished" party. We hope to get everyone out for a celebration.
Have a FANTASTIC Friday!
Love and blessings to all,
Rachel/Mama
Hi all...Auntie JoJo here!
Just wanted to add a little blurp about the "Chemo is finished" get together. Maryah asked me several weeks ago if we could have some people out to celebrate her being done. Well, if any of you know me I said "NO WAY!!....We're havin' a HUGE PARTY girl!!"
So we'll be adding updated info as to the when part. Congratulations Maryah on getting to this day! You have made an great impact on all our lives!!! Love you tons!! XOXOXOXO
Hey Everyone! It's Maryah here.
LAST DAY OF CHEMO! YIPEE! I am so excited! We have been celebrating all day! Me and mom have had a lot of fun! We visited mom's work and then went shoping at the mall. Now Sara is here to spend the night. We are going to watch a movie and hang out it will be fun! Thank you all for keeping me your prayer's and thought's. YOU ALL ROCK!!!! Thanks for keeping in touch! All my love! God Bless you all!
Maryah
Wednesday, September 15, 2004 9:05 PM CDT
Hi again!
Well, we made it through half of the week so far! Two more days of chemo left and Maryah is well on her way. She is doing beautifully. These chemo drugs are a bit harder on her system. She has been tired and nauseated. School has been pretty much out of the question this week but Maryah is doing a super job keeping up on her school work. Thankfully, good buddy Sarah is bringing Maryah's homework over the house everyday so she can keep up! Thank goodness for our friends.
Besides feeling lousy most of the time Maryah is having some good fun time with Nuna Elaine also. Today Maryah came home with her entire head painted in beautiful colors. Of course Maryah painted Nuna's face also. They are so silly and fun! Tomorrow Ry and Nuna will make bars to bring to the staff at the clinic to celebrate the last day of chemo. The folks at Hem/Onc have become our "extended family". They know Maryah, Morgan, Zach, Elaine and I pretty well! It will be strange not to see them as frequently as we do now. As Nuna put it "We love ya but we'll see ya later!"
Well, I am off to bed to try and get some shut eye before Maryah gets up to go to the bathroom (hydration keeps her in the bathroom all night). :)
Hope everyone is having a blessed week. I am hoping Maryah will feel up to journaling on Friday so she can share her excitement with everyone. I am sure we will be laying low most of this week until she is back up and ready to roll!
Love and Blessings to all,
Rachel/Mama
Monday, September 13, 2004 12:19 AM CDT
Good Afternoon!
If you haven't had a chance to read Maryah's journal from yesterday check it out...it's fun!
Well, here we are at the LAST round of chemo. It seems as though this past nine months has simply flown by. The time as a whole has gone quickly even with some of the days, nights, weeks that seemed to drag on forever.
I want to say a special thank you to all of you for your continued support and words of encouragement. It is easy to stay strong in the midst of a crisis when your mind is on full throttle. It is harder to stay strong when the pressure/fear is relieved.
We will get through this week and get Maryah's counts up and we will be on the road to a full recovery!
I am so proud of you Maryah. I am proud of your grace, your endless humor. I am always proud of the wisdom (beyond your years) that you exemplify daily. Most of all I am proud of your faith in our Lord that he would heal you and keep you in a time of need and even in times when there was no need at all. I am forever impressed that your prayers were never for yourself but always for others that needed the prayer "more" in your opinion.
You, my child are a blessing for all who encounter you and I am so blessed that the Lord brought you to me to care for. I promise to do the best job I can and to lead you by example as you have led me and many others. I love you with all of my being, you and Morgan are my pride and joy!
We will keep updating and using this site to communicate with friends and family for some time. Please don't quit checking in...there is bound to be news! We love coming and seeing who has been here to visit. It is a tool that has brought us comfort on many levels. Thank you!
Love and blessings to all,
Rachel/Mama
Sunday, September 12, 2004 11:32 AM CDT
Hey Everybody!
How is everybody's Sunday morning going?? Mine is going just great! This morning my dad and I am Morgan went to Key's Cafe for breakfast and had a wonderful meal as alwas but this time Amy and all of the staff came over and pleaged me money for my marathon and all together I got 64 dollers. Now I only have 64 more dollers to earn. I thought that was a preatty good start off for the morning don't ya think? I am having a BLAST at my new school! All the kids are very nice and take really good care of me! On the first day of school the class gave me a really nice card that the hole class had signed and they have benn helping me carry my book's when we go to a diferen't class and they help me in the lunch line and the best part is they even through my lunch away for me. They are really really nice! I think I am doing good so far I get what they are doing in class and I get the stuff that I missed and that is good! I am having fun going home with sara after school! We have a lot of fun! when we first get home we do are homework and if we have time we play a little bit! It is nice! Well I hope you all have a great morning and afternoon ok! All my love! God Bless you all!
Love maryah
Wednesday, September 8, 2004 7:27 AM CDT
Hey everybody!
I have a couple school events that I need your help on...
The first event is my school marathon that I am walking in and I need some sponsors. My goal is to raise $125 for my school. Please sponsor me if you would like.
The second event I want to invite all of my family and friends to an Old Fashioned Family Fun Night this Saturday 10-4. This event will also help raise money for my school.
As a lot of you know I started school last Wednesday. I have had a blast so far! It is a little weird waking up every morning and having to get up and get ready for school! My teacher is very nice! Her name is Mrs.Helmberger. I really like the way she teaches us. I think this is one of my favorite schools so far! Ok well I have to go to school right now! All my love! God Bless you all!
Maryah
P.S. Jo Jo and Mom will have a booth at the Family Fun Day on Saturday selling some of Jo Jo's beaded jewelry pieces.
Love to all,
maryah
Wednesday, September 1, 2004 9:11 PM CDT
Maryah's first day of school was a big success. She enjoyed herself a great deal and was so happy to be surrounded by kids who were curious but kind enough to ask questions and help her throughout the day!
Maryah's first homework assignment for Religion is to prove that God exsists!!!! Can you imagine...CAKE! If anyone knows our good Lord exsists it is this little girl. She is proof herself that He is good and He certainly does exsist and provide for His children. Wow!
She laughed a bit when she told me about this assignment and explained that if the whole year was going to be this easy she's got it "in the bag".
She continues to bring a smile to my face and remind me of how blessed my life has been and is today.
She is so very glad to be back to school and getting in to the swing of things and I am so glad for her, it brings my heart great joy!
I finally got the pictures downloaded, enjoy. I am still trying to muttle my way through technology and learning new programs. I will figure it out someday in all of my "free time" (hahahahaha).
Love and blessings to all,
Rachel/Mama
Tuesday, August 31, 2004 9:56 PM CDT
Hi Everyone!
Tomorrow is the first day of school for Maryah. It has been nine months since she was last in school (plus a few days). Maryah will start the fifth grade at IHM-St.Luke's tomorrow with her good friend Sara.
Tonight Maryah threw out a pitch at the St. Paul Saints baseball game. It was good fun and she had a great time watching the game with family and friends. We had to get home early however so she could get to bed nice and early to prepare for her big day at school tomorrow.
Today marked the second to last round of chemo. We have one round left in two weeks.Friday we will meet with Dr. Thompson to find out our next course of action to get Maryah walking like a champ. We will update after we get the word. The last round of chemo will be the five day round and Maryah may miss a little school but then she will be back to it full swing.
I am sure it will be a little hard for Maryah to get used to going back full time but she is very excited and happy to be getting back.
This has been an incredible nine months. Amazing how long that nine months felt when I was carrying her ten years ago and how quickly it has gone now. Both of these nine month periods I mentioned were made easier and more bearable for one reason...MARYAH!!!!
As Zach has said, Mo is the heart of the family and Maryah is the spirit. She keeps us going and puts things into perspective for many.
Bless each of you in your day tomorrow whether you are starting school, going to work or just spending the day on your own. We send our love and prayers your way!
Love and blessings,
Rachel/Mama
P.S. Still having a little trouble with the computer and can't get more wedding pictures or camp pictures downloaded. I will keep at it and get them out there this week!
Sunday, August 29, 2004 2:51 PM CDT
Hey Everybody!
How are you all doing?? I am doing great! My cousin Kira's wedding was yesterday and that was a lot of fun! I was the Jr. Bridesmaid! It was so fun! That is all I have been doing just getting ready for the wedding! I am so excited for school to start! If any of you don't know my school closed down so I am going to go to St.Luke's for school! I can't wait we start on Wednesday! I am going scool shoping tomorrow! I can't wait to see what my school uniform look's like! I hope they still have all the stuff I need for school! We are a little late on the school stuff! But that's ok! I haven't told my best friend sara yet so I think she will be really happy that I am going to school with her this year! She is my best best best best best friend ever! Today I am going to hang out and play with my sister Mo! She is so CRAZY! She is really excited about turning the big four! She think's she is my older sister already! I am amazed at the thing's she thinks! She is so funny! I think Kira and Jeff take off for there haney moon today! They are going to Mexico! It's just not fair! What am I talknig about I get to go to Florida and swim with the dolphine's! YAAAAAAAAAAAAAAAAAAAAAAAAA! Ok well I am going to go now! All my love to you and your family's! God Bless!
Maryah
Monday, August 23, 2004 4:10 PM CDT
FYI - Our good friend Diane (D.D.'s Dance Studio) nominated Maryah for their "Half-Pint Hero" award and they saw it fit to honor her at next Tuesday's (August 31st) game at 7:00PM. Thank you Diane for your generosity! General admission tickets are available for those of you who are interested in attending, but call right away because tickets are going fast. They asked her to throw out the ceremonial first pitch. If you are interested in going, let us know so we can all sit together. PLAY BALL!
Zachary
Hey Everybody!
What are you all doing?? I had a blast at my Aunty Jo's house! THANK YOU AUNTY JO AND UNCLE JAMES FOR THE AWESOME BON FIRE! I had a blast at the bon fire! We made somore's and the girls talked for a while. Me and Dorian got to play outside in till the boys got there and I diden't want to play with the boys. Me and my dad are just hanging out today. I might go see a movie with one of my best friends Megan. She just go home. She was out of town with her family for a while. But My dad dose not have a car right now so We can't do anything right now with out a car. Well I am going to go make a plan with my dad. All my love! God bless you all!
Maryah
Monday, August 23, 2004 4:10 PM CDT
Hey Everybody!
What are you all doing?? I had a blast at my Aunty Jo's house! THANK YOU AUNTY JO AND UNCLE JAMES FOR THE AWESOME BON FIRE! I had a blast at the bon fire! We made somore's and the girls talked for a while. Me and Dorian got to play outside in till the boys got there and I diden't want to play with the boys. Me and my dad are just hanging out today. I might go see a movie with one of my best friends Megan. She just go home. She was out of town with her family for a while. But My dad dose not have a car right now so We can't do anything right now with out a car. Well I am going to go make a plan with my dad. All my love! God bless you all!
Maryah
Saturday, August 21, 2004 6:07 PM CDT
Hey Everybody!
How are you all doing?? I had a BLAST at camp! We did a lot of stuff. Incase you diden't get a chance to read my last one we went swimming, Camping, Girls night out, and other stuff I just can't reamember. Right now I am my aunty Jo's house. We are going to have a bon fire tonight if it dosen't rain witch I think it might do but if it dosen't we are going to have one and make somore's. They sound really good right now! The hole family is going to come on my uncle James side. Tomarrow we are going to just hang out. We might run some arens but other wize just hanging out! Yeasterday I got some blood. My counts were really low! Actully as low as they have ever been! It wasen't the best day. Today I feel much better though. Ask my mom she will tell ya. I am talking like a CRAZY preasone! Well I am going to go hang out now! All my love to friends and family! God Bless!
Maryah/Ryah
Wednesday, August 18, 2004 12:05 AM CDT
Hey Everybody!
I am at camp right now and I am having a BLAST! I am coming home tomarrow at one o clock! I am very excited! I miss my mom and dad very much and mo! I am having a lot of fun at camp! We have been going simming, Planting, games, cooknig, And tubing! They have been donig a great jod at keeping us intertand. Well I am going to go now. All my love!
Maryah
Wednesday, August 18, 2004 12:05 AM CDT
Hey Everybody!
I am at camp right now and I am having a BLAST! I am coming home tomarrow at one o clock! I am very excited! I miss my mom and dad very much and mo! I am having a lot of fun at camp! We have been going simming, Planting, games, cooknig, And tubing! They have been donig a great jod at keeping us intertand. Well I am going to go now. All my love!
Maryah
Wednesday, August 18, 2004 12:05 AM CDT
Hey Everybody!
I am at camp right now and I am having a BLAST! I am coming home tomarrow at one o clock! I am very excited! I miss my mom and dad very much and mo! I am having a lot of fun at camp! We have been going simming, Planting, games, cooknig, And tubing! They have been donig a great jod at keeping us intertand. Well I am going to go now. All my love!
Maryah
Sunday, August 15, 2004 7:54 PM CDT
Hi again,
Well...Maryah is off at Camp Courage. We dropped her off today at about 3pm and she definately was more brave than I ever expected her to be. Thanks to Zach's great coaching she really was very prepared and had no trouble telling Mom and Dad to "get lost". There were quite a few girls in her cabin that I am sure she will get along with well. She was so excited to meet new friends that have had similar experiences. One of her cabin mates is named "Jo Jo" so she felt right at home, in fact they hit it off immediately and were off to play checkers before we could even make it up the pathway to the car! It is a beautiful camp and I think that Maryah will have a great deal of fun. She will be coming back on Thursday rather than Friday in order to be at her cousin/friend Tiana's birthday party. She will be taking pictures of her adventure that we will download to the site once she returns. Keep leaving messages... she will be happy to know her friends and family were thinking of her while she was gone.
It will be a quiet week on the site unless something comes up for us to update on. Hope everyone has a fantastic week and can remember the fun times of youth and going off to camp! It's fun to remember our "younger" days!
Lots of Love and Blessings sent your way,
Rachel/Ma
Friday, August 13, 2004 3:36 PM CDT
Hey Everyone!
How is everybody's day going?? I just got done with chemo a little bit ago. I feel great! I had some steak, Potatoes, And tost it was really good! I can't beleave that I only have two rounds to go! It is amazing how far a have gotten! I can not wait for camp! It is going to be SSSSSSSSOOOOOO much fun! Today at the clinc All the kids there were going to camp and they seemed preatty nice so I am thinking this will be a blast! I will be having so much fun it will go by so fast I won't even miss my Ma And my dad! I hope you all are having a great day! Have a great night and rest of the day! K!
All my love! God bless.
Maryah/ Ry
Tuesday, August 10, 2004 4:23 PM CDT
Two days down and just three to go! We made it through the second day of chemo and Maryah has, as usual a fantastic attitude. She never seems to let anything get her down. It's so nice to see her smile even when she feels yukky! Yesterday was a bit tougher than today with an upset tummy. Today seems to be a little easier on the stomach. Maryah isn't suffering in the appetitie department however. She seems to still keep eating well.
Today Maryah had a massage and said it was "the best". She even fell asleep.
Today and tomorrow Maryah and I are spending the day together while I have a couple of days off of work. It's nice to be with her and see everyone at the clinic. Zach has been in charge of most all the clinic visits lately. We're already talking about and "after care" plan for when chemo is finished. This plan will tell us how often after chemo is over she will go to the clinic. They also told us that after about 4-6 months after chemo they will remove her Port. She will then start to have her lab draws from her arm like anyone else. This is all good news and we are feeling glad to be talking about the "end" of treatment.
I hope that everyone is doing well and having a fabulous week. We will update again as the week goes on. Maryah will be leaving for Camp Courage on Sunday!!! BIG DAY FOR HER!!!!
Lots of love and blessings,
Rachel/Mama
Sunday, August 8, 2004 11:34 AM CDT
Hello again,
It is Sunday afternoon and we are gearing up for the week ahead. Maryah starts chemo tomorrow. This will be the five day round for her. This has been a fun filled weekend. Maryah spent part of Friday with Dad and then spent the afternoon with Dianne at the dance studio where she had the opportunity to meet up and coming music artist, angel. She rented Dianne's studio to practice for a show she was performing at the Mall of America on Saturday. She autographed a CD for Maryah and gave her a T-shirt and hat. Maryah thought she was very nice and enjoyed meeting her a lot. Thanks Dianne!!! Then we spent the rest of Friday evening at Mark and Angie's for a bar-b-que and had lots of fun!
Saturday morning Angie, Mark and the kids walked in Derian's Dash for the Spare Key program. They had a butterfly released in Maryah's honor. We searched all day for the butterfly! We spent Saturday afternoon out at Auntie Jo and Uncle James' house. We went to Acorn Days and Maryah got a henna tattoo of a dolphin on her leg. We had some treats and then spent some time hanging out with Jo Jo and the kids. Maryah and Jo Jo rode the electric scooter down to Gramma Butchie's house and OOOPS!!! they took a little spill. Maryah got a little scared but no injuries...it gave us a good laugh afterwards! Way to go Auntie Jo!!!! :)
Today is just a relaxing, cool day and we are waiting for the Home Care nurse to come and access Maryah for her hydration. We usually prepare for chemo the night before to save some time in clinic on Monday.
We are headed for another busy week but it's another round down.
Maryah will be heading to Camp Courage August 15th- 20th along with other kids being treated for cancer. They have RNs and Docs on staff there to watch over the kids. They wil get to do many fun things including swimming, camping, crafts, etc. Maryah is a little nervous to go away from home but excited at the same time. The camp is in Maple Lake, MN and close enough to home if a need arises.
Nuna, Bryan and Uncles Nate and Andrew left for Australia this past week. They will visit several parts including, Sidney, Melbourne, etc. They won't return until later in the month so we wish them a fun and safe trip!
We also have a new addition to the Tift clan. Matthew and Marnie Tift had little Leah Evelynn Tift on Saturday, August 7, 2004 at 3:25 p.m. Congratulations to cousins Matt and Marnie and new Grandma and Grandpa Jim and Jan! Lots of love to each of you and the new little baby.
Wishing you all a terrific week with lots of smiles and joy!
Love and blessings,
Rachel/Mama
Wednesday, August 4, 2004 7:30 PM CDT
Hi everyone!
It is a lovely evening and we are enjoying how it has cooled down. The girls and I always enjoy this sleeping weather. In fact Ms. Crazy Morgan slept in until 7:30 this morning while Ry and I were up by 6:30. Silly little girl. Maryah has had a wonderful week thus far. We had an AWESOME day at Square Lake in Stillwater, MN on Saturday. We had our whole family together and it was such fun and nice weather. You should have seen Maryah tooling around on a floaty raft with her cousins. She was swimming a ton and even got dumped off of her raft by Auntie Jo Jo after a splashing fight! It really was nice to be with everyone and have such a fabulous day. It is one of our favorite days of the year. There are certain parts of the day that are favorites. This year as Auntie Annie, Sarah, Auntie Kim and Auntie Jo and I were floating around we commented that our favorite time is close to sunset when we finally leave the water and enjoy hot coffee while watching the kids continue to splash around in the water until we force them out.
Maryah has been stretching her leg and working hard in PT. Dad took her to PT today and Kevin had her working hard again. Tutoring is over for the week but she will keep plugging away at memorizing her mulitplication tables. She's working so hard!
Blood counts are good now and they will start round 12 of chemo next week. Just three left! The last round will come during the second week of school but then she will be through and can get back to the swing of things...and hair, there will be hair growing soon! She is so excited for that because sometimes the endless stares get old! Bless her heart that she can smile when people stare.
It is such a blessing to see the light at the end of the tunnel. Of course I never forget what a blessing we have received because there are so many who don't see the end as we are seeing it. We miss the friends we have lost and we will continue to support the research to find a cure for this beast we call Cancer!
We look forward to hearing from you! I never realized how much I really love reading the messages and how much support they offer me as well. Thank you for your diligence in keeping up with our family and leaving your encouraging words. It is such a warm feeling to know everyone cares and is out there even during our busy lives!
We'll update more soon. Enjoy the rest of your week!
Love and Blessings,
Rachel/Mama
Tuesday, August 3, 2004 7:54 AM CDT
Hey everyone!
How are you all doing today?? I am doing great! Sorry I haven't done a journal in a while! I have been a very busy girl! On Friday I went shoe shopping with Debbie Delisi and Tess, then they Debbie brought us to a play Avery was in. On Saturday I had a family gathering at Square Lake and on Sunday I went to the Hillary Duff concert with my really good friend Meagan. Today I have tutoring and pool PT.
Maryah
Thursday, July 29, 2004 4:21 PM CDT
We just found out the Key's Golf Tournament and Charity event last month raised $14, 176. 67! Thank you to the Key's (Hunn) family, Amy (Bomb) Mohowald, all staff and everyone who sponsored the event and/or a hole and played in the tournament!
This afternoon Maryah, Morgan and Adam (our close friend who used to live with us) went to the Key's on Lexington for the official hand-off of the check. The whole Key's Family was there and they whooped it up again (just like they did at the tournament). They took pictures and gave Morgan a present too! Morgan told me a few days ago that she wanted a pink backpack and without me telling them they got her one. Morgan never asks me for anything and the one thing she asks for they give her. Christmas came early this year. They picked up lunch, gave us posters from the event, plenty of hugs, and even some cookie dough.
The fund has grown and will be used for some of Maryah's medical bills, medications and overall care. Down the line, after her expenses have been paid in full, Maryah would like to either donate a portion of the remaining funds to an existing research organization OR establish a fund that would support other financially strapped families who experience a life threatening childhood illness.
Just a side story: My Godfather - Bob Tift - used to bring me to Key's Restaurant in Uptown when I was little because he said "they have the best hash browns". He only took me there two or three times as a kid when I'd spend the weekend with him at his little apartment over in South Minneapolis but I've always looked back at those times with my Unc at Key's with nostalgia. At the tournament my Uncle Bob and I stood out on the green - at the very event where Key's was now hosting a charity event for my daughter - and we appreciated how some things come full circle. I also told Uncle Bob that I passed on my love for Key's to Maryah at a young age. She especially loved the Mickey Mouse pancakes when she was little...and the hash browns.
The Key's on Raymond Avenue in St. Paul (near University) now has the framed scrapbook page from Maryah. She gave it the Key's family as her thank you for their love and support. When you get the chance - sooner rather than later - stop by one of the (7) Key's locations in the Twin Cities and tell them thank you for all they have done. Give them a hug from us and good business.
Thanks again, take care and God bless...
Zachary
Monday, July 26, 2004 10:48 PM CDT
Good Evening,
Rein in Sarcoma was a great success. We really enjoyed ourselves and Maryah rode the carousel quite a bit! We met many, many Sarcoma Survivors who were adorned (as was Maryah) with Sunflower corsages. It is so AWESOME, that word SURVIVOR. It is such a blessing to say that our daughter is a survivor.
We were honored and touched by all of our friends and family that joined us in riding the carousel for such a worthy cause. In memory of Karen Wyckoff and in honor of Maryah! Thank you once again for blessing us with your presence, support, kindness and love! What a tremendous and touching evening. I was so glad to be a part of it.
Peter Wyckoff said that he was only expecting a little over 100 people to show and over 200 attended the festivities. It was a fabulous turn out.
Once again today I am overwhelmed by the outpouring of others in support of Ms. M. Not quite sure how to express thanks and gratitude. We love you all and you are the pulse of our strength.
Thank you all for making it a wonderful and fun evening. We hope you will join us at this event annually.
Maryah will start chemo tomorrow. This time only one day...yeah!!! Keep the prayers going...it's not over yet!
Love and Blessings,
Rachel
Friday, July 23, 2004 5:43 PM CDT
Hi to all,
It is Friday evening and the work week is finally over. Ms. Maryah has spent most of the week at Angie's helping with the little ones. She has enjoyed doing that all week. Maryah's counts came back last night very low and she needed to have a Red Blood Cell transfusion today. She has perked up a bit but we will still be cautious this weekend.
Maryah was a little sad not to go to Angie's today since she was looking forward to helping take care of baby Avalon. She will be a tremendous babysitter someday soon.
We had a nice visit from Auntie Jo Jo, Dorian and Shayna last night.
Maryah will have chemo again on Tuesday. This round will be only one day for one and 1/2 hours. One of the chemo drugs Maryah has received she is finished with. Doxirubicin will be cut out of her treatment from here on out. That means a shorter round and feeling better faster. I am glad that we are getting to the end of this journey. I hope that it truly will be the "end".
Monday night we will be at Reign in Sarcoma, the fundraiser for Sarcoma research that I have mentioned in a previous journal entry. It will be held at the Como Park Carousel. Maryah had a visit from a reporter at the Pioneer Press on Wednesday. She will be part of an article for Reign in Sarcoma. The article will be featured on the front page of the Express section in the Pioneer Press on Saturday 8/24. If you get a chance take a look, it will be fun to see Ry in the paper.
We hope you all have a great weekend and we keep looking forward to your messages.
Love and many blessings,
Rachel/Mama
Friday, July 23, 2004 5:43 PM CDT
Hi to all,
It is Friday evening and the work week is finally over. Ms. Maryah has spent most of the week at Angie's helping with the little ones. She has enjoyed doing that all week. Maryah's counts came back last night very low and she needed to have a Red Blood Cell transfusion today. She has perked up a bit but we will still be cautious this weekend.
Maryah was a little sad not to go to Angie's today since she was looking forward to helping take care of baby Avalon. She will be a tremendous babysitter someday soon.
We had a nice visit from Auntie Jo Jo, Dorian and Shayna last night.
Maryah will have chemo again on Tuesday. This round will be only one day for one and 1/2 hours. One of the chemo drugs Maryah has received she is finished with. Doxirubicin will be cut out of her treatment from here on out. That means a shorter round and feeling better faster. I am glad that we are getting to the end of this journey. I hope that it truly will be the "end".
Monday night we will be at Reign in Sarcoma, the fundraiser for Sarcoma research that I have mentioned in a previous journal entry. It will be held at the Como Park Carousel. Maryah had a visit from a reporter at the Pioneer Press on Wednesday. She will be part of an article for Reign in Sarcoma. The article will be featured on the front page of the Express section in the Pioneer Press on Saturday 8/24. If you get a chance take a look, it will be fun to see Ry in the paper.
We hope you all have a great weekend and we keep looking forward to your messages.
Love and many blessings,
Rachel/Mama
Monday, July 19, 2004 3:22 PM CDT
Hey Everyone!
Sorry I haven't done a journal in a while. I have ether been bisey or just not feeling well. How is every body doing on this hot but nice Monday?? I am doing preatty good for just finishing up with chemo. I am at Angie's house right know. She put me to work. Just kidding I have only helped a little bit with the kids and that's preatty much all. We are just finishing snack. She is soooooooooooo
Cool! THANS ANGIE! I love coming over here and spending the day with her the kids and the food. Her food is so good!
I hope you all are having a GREAT day! All my love and prayers sent your way
Have a great day!
God Bless
Maryah
Saturday, July 17, 2004 7:11 PM CDT
Good Evening,
Maryah and I enjoyed some time out at Auntie Jo Jo's house last night. Maryah felt like a fun sleep over with Auntie Jo and I was right on the same page. Zach dropped Maryah out earlier in the afternoon and I went out after work. We enjoyed some supper together, scrapbooking, baking and then some late night movies. We had lots of fun. Thanks Auntie Jo.
We are looking forward to the next week being a good one, we are keeping our outlook positive even though we have determined that we are still looking at four rounds of chemo instead of the three as we originally thought. Just a subtle reminder that we are not in control and just have to be able to adapt to a new schedule at the drop of a dime.
Maryah has a busy remainder to her Summer. On top of chemo, PT, and tutoring Maryah will be going to Reign in Sarcoma, Square Lake for our annual family picnic (one of our favorite family traditions), she will be attending Camp Courage in August for kids with Cancer (this is a big step for Ry) as well as the wedding. Our friend Linda is helping to make her dress and she is excited about being a bridesmaide. We were hoping for a party at the end of Summer for the finishing of chemo but it looks like we will have to postpone until the Fall. We'll get there!
I am sure that Maryah will update her journal's this week while she is at Angie's so you will hear lots in her own words. Keep in touch we love receiving your messages.
Lots of love and blessings,
Mama/Rachel
Wednesday, 1:45 PM
Maryah is half-way through her long round of chemo. Sometimes a round is for two short days (each actual chemo push lasting about a half hour) and other rounds can last all week (each push lasting two-three hours). This is her 11th round with three left to go.
We've been using a boxing analogy to help her get through this "bout" with cancer. I told her (what seems like) a long time ago that if I could fight this fight for her I would, but I can't so she'll have to. I also told her that I am her ring-man and all of her family and friends are the crowd cheering her on. This has been a long fight but she has pretty much won this thing...it's almost over. Just a few more rounds before the final bell.
Thank you for cheering her on. Take care and God bless...
Dad
Wednesday, July 7, 2004 8:52 AM CDT
Hello!
How is it going?? I hope all of you are having a great day! I have had a BLAST over the last few day's. The 4th was a blast and the reast of the time we have been doing fun stuff like going to the zoo and going with my mom to her hair cut and mo's hair cut. Mo diden't just get a hair cut she got pink lines in her hair. Don't worry they come out really easy we will go back soon and get them taken out. I hope all of you are have a great day.
Love and prayers to all.
Love maryah
Monday, July 5, 2004 9:48 PM CDT
Hello,
It is Monday night and Maryah is fast asleep. She has been rather tired lately. We spent the weekend with family in Little Falls to celebrate the 4th as well as cousin Arielle's birthday. We had a great weekend. Today I took the girls to the MN Zoo and we spent some time with the dolphins wondering what it will be like to swim with them in the Fall. We also got a chance to see the new wolf pups.
Maryah's counts have come back from this morning and look great in comparison to last week. Her total blood count at over 7,000 has come up from 3! However her platelets are still low enough to be concerned enough not to start chemo tomorrow.
We will talk to Dr. Slo tomorrow to make a plan for when to start. If I were a betting woman I would say we won't start until next Monday. If that's the case we will be running a bit behind but that is okay! We have learned (if nothing more) through this journey that we can only take life hour-by-hour and sometimes even minute-by-minute.
In the mean time Maryah will continue with tutoring and therapy to the best of her ability. We will keep you posted through the week.
Lots of Love and Blessings,
Mama/Rachel
Sunday, July 4, 2004 11:12 AM CDT
Hello,
HAPPY 4TH OF JULY! I am at my cousin's house right now. We are just waiting for everybody to get here. My Mom and I and Mo spent the night last night. I got my cousin, Kaitlyn a charm bracelet like mine. I didn't get her any charms because they cost a lot of money. We are also celebrating my little cousin Arielle's birthday. HAPPY BIRTHDAY ARIELLE!!!!!!!!!!! WE LOVE YOU A LOT!!!
Love family!
My cousin Kaitlyn wants to right something now.
Love to all.
Ryah
Hi,
Happy 4th. Yesterday Ry and I went in the pool in my backyard. We had a lot of fun. Mo never decideed wheither to go on a floaty or not. I hope everybody has a great 4th.
Have a great day!
Love,
Kaitlyn Emerson and Ryah Emerson Tift
Thursday, July 1, 2004 9:49 PM CDT
Good Evening,
Ms. Morgan and I are here to give you the latest update on big Sis.
Maryah's counts have been way down this week with an ANC (Total Blood Count) of 5 (normal is upwards in the range of 12,000). She has spent the past couple of days in a good deal of pain from mouth sores and just all around feeling "junky". Today when counts came back we found that Hemoglobin was way down as well as plateletts. Maryah wound up in Short Stay for a red blood cell and platelett transfusion. While visiting for a blood transfusion she spiked a temp that didn't seem to want to come down so they have admitted her back to her "favorite" room on 4200. Maryah was a little sad but she seems to sense that it is best for her to be there. She needs to have that "confinement" and medication to get her out of the woods. They will give her another IV antibiotic as well as hydration over night and we will know more tomorrow.
I know Maryah doesn't want to miss her sleep over at Cousins Kaitlyn and Arielle's house this weekend. You never know...Maryah always seems to bounce right out of these "slumps".
If you'd like to call Maryah tomorrow she is at (651) 220-7091. I would suggest a call but not visits as she is very suceptible to germs right now. Otherwise please keep leaving messages on the site...she lives for checking this site!
Thank you for all the continued support and blessings you provide for us. Our prayers, as always are always with each of you and we thank Him for all of your love.
Lots of Love and Blessings,
Mama/Rachel
Tuesday, June 29, 2004
Thank you to the family and staff at Key's Restaurant. They hosted their 1st ever Golf Charity event today and it was a blast!
Maryah spent the day cruising around the course in her own golf cart with her cousin and enjoying the perfect weather. She sponsored the 18th hole as a thank you to everyone involved and they placed pictures of her everywhere. Plus, the food and silent auction were awesome as well.
All proceeds went to the Maryah Tift fund due to our friend Amy Bomberg (who manages their Lexington and Larpenteur location) who put in a lot of hard work and dedication. Months ago Amy put Maryah's name in the hat for a possible recipient and they voted unanimously to donate proceeds to her fund. Thank you again to Key's Restaurant and Amy Bomberg. We urge you to try their food if you haven't already.
Maryah is back to PT and tutoring this week and she starts her 10th round of chemo next Monday. Her energy is low but her spirits are high. Love and blessings to all of you...
Zachary/Dad
Maryah's Ring-Man
______________________________________
Hi all!
In addition to what Dad already wrote let me add by saying how AWESOME the golf tourney was! We had so much fun. It was such a blessing to see all those people coming out to golf in Maryah's honor (105 to be exact). The Key's family and our dear friend Amy (Bomb)worked her tail off to support Maryah! It was such a HUGE success and that is simply an under statement. Maryah and Kaitlyn toodled around in the golf cart taking turns driving and socializing with the golfers. We were proud to have Papa Denny, Uncle Greg, Uncle Floyd, Larry Sly, Mark Rein, Uncles Bob and Jim Tift as well as good friend Will "Ola" golfing for the Emerson/Tift family! What fun...I just can't say enough and I can't quit smiling.
Thank you all and thank you Amy, you are dear to our hearts!
Lots of Love and Blessings,
Rachel/Mama
P.S. Check out the golf tourney pics!
Monday, June 28, 2004 10:53 AM CDT
Hello everyone,
We are back from cow countrey. We had a blast out at my aunts house. She and my uncle james alwas make it so much fun for me my mom and mo. We did a lot of cool stuff. THANK YOU AUNTY JO AND UNCLE JAMES!!!!!!!!! I am feeling preatty good today my leg is preatty sore but the reast of me is feeling GREAT! I hope you all had a good weekend. I can't beleave the golf thing is tommarrow. I am really exsited to see my cousin Katlin. It feel's like for ever since I'v seen them. I'm tell'n ya I think it's about time they moved to St.Paul. I hope some of you can come tommarrow it should be a lot of fun.
Well I hope you all have a great day!
All my love.
Ryah
Saturday, June 26, 2004 10:12 AM CDT
Meanwhile back at the ranch...
It's Saturday and we are out at Auntie Jo Jo and Uncle James' house. We spent the night last night after getting here and driving to Grandy for some good ol' fasioned fried chicken. Then we went to happenin' Downtown Cambridge Dairy Queen for a cone! Morgan and Shayna were merrily avoiding cow bisquits (hawhawhaw). Then Ma and Pa Martinson brought us back to the ranch where we built a bonfire and lit off some "popping lights" as Mo calls them (fireworks). We crashed after lots of fresh air and bug attacks.
Today we will pack some snacks and a picnic lunch and take a drive to the St. Croix. The kids are having a blast together and I of course always enjoy my time with my sis and James! We will be at the ranch if anyone needs to reach us until tomorrow.
Please send overalls soon, I will find my own hay out the back door here in cow country.
Maryah is feeling pretty good today with the exception of difficulty straightening her leg. We are working diligently on her daily excercises. I have some how turned into the PT Nazi! MEAN OLD MOM!!!!!
Well...I hope everyone is having as enjoyable a weekend as we are.
Love and Blessings,
Mama/Rachel
Thursday, June 24, 2004 11:08 AM CDT
Hey everyone!
How are you all doing?? I am doing GREAT! I am at the library righting this journal entry right know. I am doing pretty good for just geting done with chemo. When I leave the library I am going to Angie's house. I have know idea what we are having for lunch but it is alwas good. I hope you all are having a GREAT day!!!!
God Bless you all!
love maryah
Hey!
I have one more thing to tell you. I got my first e mail adress. So if any one want's to right to me my e mail adress is...
rypie10_04@yahoo.com
my best friend megan helped me put it together. God Bless you all.
Ryah
Wednesday, June 23, 2004 8:18 PM CDT
Hi all,
Sorry I have been neglecting the site. It has been a busy week but here we are at hump day!
Maryah started chemo on Tuesday since counts weren't quite ready by Monday morning. She is already DONE with this round (#9). This was the two day infusion and so it goes by quickly (thank goodness). Maryah has had a good week and has already had a couple of PT sessions with another in the pool tomorrow bright and early. Maryah will spend the day with Nuna tomorrow since Dad has to work.
Maryah wanted me to share with you that she received a special letter in the mail this week. She received a letter from Senator, Mark Dayton on official paper and all! Senator Dayton had heard about Maryah and visited her site to read about her. He commended her on her strength and enthusiasm. It was a very special treat to recieve a letter from a US Senator. Maryah is very proud!
Unfortunately we also recieved a letter from the Archdiocese telling us that they are planning to close St. Columba this Fall. Maryah is very sad about that and we are shocked at the decision. I am recruiting every family I know in the community to commit sending their kids there in the Fall. If we can but together a solid appeal we hope that the Archdiocese might change their decision. So...if you are in the community and have kids that are grade school level please consider sending them to St. Columba. Call me if you have questions, I would be happy to answer them. Sorry to use the site as a recruiting avenue but it is an important issue for me as well as our young Maryah. We have found St. Columba to be an assett to the community and the staff there is incredible. They have been such a blessing to our family!
Well, on to another subject, Mo started T-Ball tonight and Maryah came to watch and cheer on her sister. Mo is on a team (The Little Red Cardinals)with her friends Reenie, Griffin and Andy. She is having a ball and even got to go for chocolate ice cream as a treat after the game tonight. I wonder sometimes if it is more fun for the parents rather than the three year olds?! Oh well!!!! Fun for all I guess.
I will continue to update this week. I hope everyone is having a blessed week. Thanks for continuing to come and visit! We love your messages and that you continue to give your hearts.
Love and Blessings,
Mama/Rachel
Monday, June 21, 2004 2:51 PM CDT
Hello,
How is everybody doing today?? I am doing GREAT!!! I woke up this morning and watched a little bit of TV. Then my Dad and I and my little sister went to PT which is never that fun but I always have a great feeling when I am all done. After that I had an echo. And then I had to go to the clinic for more blood draws. I swear by the time this is all done I won't have any blood left. Now we are home and I am just kind of hanging out. I can't really do much because my counts are so low but it is always fun to read or do homework or watch a movie. I hope you all are having a GREAT day! All my love and prayers sent to all of you. God Bless,
Maryah
Sunday, June 20, 2004 12:52 AM CDT
Hello everyone!
HAPPY FATHERS DAY TO ALL DAD'S!!!! How are you all doing today?? I am doing GREAT! My dad and I and my annoying little sister woke up and we had pancake's and then we went to curch and know we are home and just hanging out. In a little bit my grandpa is going to come over so my dad can see him for fathers day. When he leaves we are going over to a BBQ for a friend of my dad's. I hope you are all having a GREAT fathers day! all my love and prayers sent to all of you. Have a GREAT day!!!!
Maryah
Saturday, June 19, 2004 2:15 PM CDT
Hello all,
I hope everyone is having a great weekend! I wanted to get a brief note out just to say Thank You! Thank you to Kim and Brian Emerson for putting on the garage sale this week. Thank you to all of you who participated in the garage sale. It was so neat to see the signs on Smith Avenue that said "Garage Sale for Maryah"...thanks Kim! Everyone is so terrific at participating in supporting Maryah anyway they can and I can't tell you how humbling it is to see and experience that!
Happy Father's Day to all the Fathers and Grandfathers out there. We wish Zach a special day for a special Dad!
Lots of Love and Blessings,
Ma/Rachel
Thursday, June 17, 2004 10:48 PM CDT
Well... it's almost Friday! TGIF!!!
We have made it through another week pretty painlessly. Maryah has been doing super through her PT and tutoring this week and feeling pretty good on top of it! Even though her counts are a little lower today she is still doing well and her spirits are up!
Maryah and Mo are having fun with Daddy and getting ready to celebrate his big day on Sunday. The girls are pretty excited about the surprises they have in store for Zach.
Maryah will start her next round of chemo (provided counts are back up) on Monday. This round is only the two day round with one day taking just about two hours and the second day just 30 minutes. Amazing how in just 30 short minutes you can feel like such crud! Well, it's that love/hate relationship we always talk about, chemo is good because it kills the cancer but it's horrible because of the way it makes you feel in the process.
Maryah is making good progress in therapy and Dr. Thompson told the Therapist that Maryah will not likely be able to get to 135 degrees (bent) as she used to and he is impressed that she is even at 102 degrees now. He does want her to be able to straighten the leg at 0 degrees however and that is what our main focus will be. More pool therapy tomorrow and lots more next week. They are finding it easier to train her leg with the fluid movements that the pool allows. The warm (bath like) water also helps to loosen her muscles. Plus, she likes it!!! BIG PLUS!
So, I continue to pray for each of you out there and remind the Lord each day how thankful I am for all of you and the support you show us. Thank you for always being on our side and taking on the your new job title of "Professional Cheerleaders". Have a fabulous weekend! Hope we see you at the garage sale!
Lots of Love and Blessings,
Ma/Rachel
Monday, June 14, 2004 8:06 PM CDT
Hello,
I just thought I would write a little journal before I go to bed. This morning my Mom dropped me off at my Dad's house so she could go to work. And then my Dad and I went to Como lake and gave food to the birds and then got hot cocoa at the cafe there. After that we went to PT and then to the clinic and then to tutoring. I was a very busy girl today. Now we are getting ready for bed and a good night sleep. Tomorrow I will be going to Angie's house for the day, I can't wait to see Megan. Then home to be with Mo and Mom. I am glad to be with my Dad during the day, he helps me to get to PT, clinic and tutoring while Mom goes to work at the Nursing Home. I have this week off from chemo but next week I have my next round. Back to the same old stuff but atleast I am almost done and I am already cancer free. Only five more rounds to go.
I am really looking forward to the Golf Tournament on June 29th. My cousins Kaitlyn and Arielle will be here with my Uncle Greg. My Papa and Uncle Greg will golf and Angie's husband Mark. It will be a fun day and I will get to ride in my very own golf cart!!!! That should be extra fun! My Mom is helping me with my spelling. I am getting better with practice! That's what spelling tests are for I guess.
This weekend my cousing Kim Emerson is having a BIG garage sale in my honor and I am hoping I feel good and can go and help her. She will have to work very hard so I hope I can help! Mom and Mo will come too.
We are planning our picnic to Square Lake for this Summer. We go every Summer with the whole family and it is TONS of fun. We swim and eat and play a lot. My cousins will all be there. We are also planning my big trip to Florida to swim with the dolphins. Mom says we will go in the beginning of November. Mo is already talking about it all the time. She is just as excited as I am about going. It will be a great birthday present for Mo since her birthday is November 23rd. Our little butterball turkey born on Thanksgiving day.
I am off to bed now and I am very tired. I will write again soon!
I love you all and God Bless each of you every day!
Maryah
Saturday, June 12, 2004 7:41 PM CDT
Hi!
It is Saturday afternoon and Maryah is just today home from the hospital. Maryah went in Thursday evening after a trip to the ER. While at the mall with Zach Maryah had another fainting spell and hit her head on the floor. After a CT scan that showed us Maryah had no head injuries she was admitted for observation and to try and get the fainting under control.
Maryah finished her chemo today and is off of her BAD drip (Benadryl, Ativan and Dexamethasone). This particular mixture made Maryah quite dizzy and we think that to be the cause for the fainting. We seem to be able to control her nausea without it.
Kevin, our pool therapist came up to visit today and we are going to try harder to spend everyday in the pool for P.T. Immediately after surgery P.T. did not get done as necessary and as frequently. This has caused scar tissue to "root" up and "grab hold" of Maryah's muscles making it more difficult for her to regain flexion and range of motion. We have some ideas to help with that and will continue intensive PT for the next two weeks. If after that time Maryah is still not improving we will consider sedation and manual manipulation of the leg to get us back to a "starting point". We will ultimately have to decide if we are going to concentrate on chemo or walking without assistance right at this point. The Docs at St. Paul Kids believe that if we manipulate now or three months from now the results will be the same...good. There will be some more decisions to be made. Maryah wants to be walking without her crutches or a walker and I of course want her to be stable which is difficult with chemo happening.
I wanted to get you an update. Maryah will be in need of rest and recouperation over the next week or so but please feel free to leave messages and call. We love to hear from you!
Thank you for your continued prayers and support. We love you all dearly!
Blessings,
Mama/Rachel
Wednesday, June 9, 2004 6:40 PM CDT
Hi again,
We are almost through the week. Hurrah! Maryah is resting on the couch and still feeling pretty blah! We had another fainting spell today and it was a little bit more scary for both of us but Maryah is doing fine now. She needs to just lay around unfortunately. It gets pretty boring watching movies and even crafts can get old! Maryah started tutoring today and held strong for the entire two hours focusing on English, Reading and Math. Maryah will have weekly Spelling tests and even HOMEWORK!!!! It's kind of fun to get back into some study routines and even Maryah will agree with that. We have a couple good books from the Library (Junie B. Jones) to read and Maryah will give reports on these.
We found out at the clinic today that Maryah does in fact have six round of chemo rather than five. This is the first of those six. So after this week we will then have only five rounds to go.
We'll make it one day at a time. Don't forget if you want to bring things for the Garage Sale at Cousin Kim's house give her a call and get rid of that stuff you no longer have a use for. I can't wait to clear some of the clutter from my house.
I hope you are all well. Each of you remain in our thoughts and prayers daily and we are forever grateful for your love and support.
Love and Blessings,
Rachel/Mama
Tuesday, June 8, 2004 5:26 PM CDT
It's only Tuesday yet it feels like it should be Wednesday or Thursday by now!
Maryah started chemo again today with a bit of delay but finally started. So far she is feeling very miserable and quite dizzy. We had a brief fainting spell this evening and thank goodness she was close to the couch and didn't injure herself when she came down. Just a short, soft fall to the couch cushion. We are keeping our eyes on her though to make sure she is doing a-ok! We think she is just dizzy from the anti-nausea medication mix she is on. It can do that. We have chemo through Saturday as well as Physical Therapy on Thursday and Friday. Maryah had to miss her first tutoring session today with Mrs. Molde but will meet with her tomorrow.
It's hard to jump back into this "chemo thing" again but amazing at how easily it comes.
We will keep you update as the week goes on. Keep on praying for Maryah, for strength and not too many side effects this time around.
Love and Blessings to all!
Rachel/Mama
Monday, June 7, 2004 3:24 PM CDT
Hello and welcome to Maryah's news report!
Today is one HOT Minnesota summer day, and just think... summer isn't official for a couple more weeks!!
Maryah will not be starting up her Chemo until tomorrow after all. A bit of a delay, but not too bad. It will be a bit of a hectic week for Rachel and the girls...they are still trying to get the schedule in order. As Rachel always says: "We live hour to hour these days!", so planning ahead is always an interesting triumph!!
I wanted to remind all of you that this is a great time of year to get rid of some of those misc. items that keep collecting in your closets!!! Cousin Kim is preparing for the big garage sale starting on the 17th of June. Let's all chip in and take the opportunity to donate items to make this sale a big success! If at all possible...please price any items yourself. Kim says that would be great, but if your not able, it's not a problem!
As always your prayers are such gracious support that this family is so grateful for!! We thank the Lord everyday for each and every one of you. I ask that your prayers be directed toward strength, that Maryah may work her leg without fearand get total control back. It is difficult, and a full time gig just to maintain those exercises daily along with her therapy!! Thank God for all the power he gives US to heal as well.
May He bless you each and every day!
Joanne/Auntie JoJo
Sunday, June 6, 2004 8:50 AM CDT
Hey Everyone,
What a glorious morning {like my mom alwas says} It is a warm and sunny day outside today. What a purfect day for Grand Old Day's. This morning we woke up and lisened to a little jazz and made some pancakes and know we are going to go to church and then to grand old day's. we are going to have a GREAT day befor chemo tomorrow. I do not know how I am ever going to finish this email morgan keeps asking me to watch her dance. well I am going to go know. Have a GREAT day!
Maryah
Friday, June 4, 2004 8:40 PM CDT
Well, we made it to Friday! TGIF! Tonight it is so beautiful outside. It was even nice enough for a water fight outside at Angie's. The girls and I ended up staying at Angie and Mark's for supper. We grilled brats and had kraut and other good bar-b-que food. The little girls all ran around the yard while Maryah squirted them with the sprayer on the hose. When Maryah decided she was bold enough to spray Mom she got a pitcher of water dumped over her too. After soaking eachother we went in to dry off and enjoy our yummy supper. We are just getting home with some movies to wind our evening down. Mo and Ry are pretty tired.
Maryah had a full day today with playing at Angie's and going to her first pool therapy session today. Nuna (Elaine) took some great pictures that I will download tomorrow so all can see how Maryah is progressing through her PT.
I realized when talking with Angie tonight that now that we are sort of "in the clear" with the tumor being gone that I have become complacent about writing on the site. I think we all feel a sense of relief and some wieght has been lifted from our shoulders. I want to keep in the forefront of my mind and other's minds that we are far from done with this. Maryah has a very full and difficult Summer ahead. There will be chemo, PT, school work and not much else besides feeling crummy. The sadness returns a bit when you finally see your hair coming in and knowing that it will just be falling out again. It's hard to hear how much work is ahead and how painful it will be. I remembered tonight that I still need to be a cheerleader for Maryah, for Mo and for myself. If I lose sight of that now I might start to sink a bit and I certainly believe that Maryah might feel a bit sad too.
I encourage you to continue to visit us at the site and leave messages when you stop by. Maryah really looks forward to finding new messages and words of encouragement. I think we all need that some days and I know Maryah needs it now. I guess this sounds to be a bit of a desperate plea but I hope that you will understand that "it's not over 'till it's over". We hope to be able to visit with friends over the Summer, to have people come and visit us when they can and to come over for visits when we can. Company and visiting are a good disraction through all of this. We are looking forward to Jessica Martin's graduation party (Dianne's last graduating daughter) next weekend! There may be days harder than others but we will keep you updated!
We hope this is the start of a good weekend for all. We wish you many blessings and smiles (even if we get the rain they are predicting)!
Love to all,
Rachel/Mama
Thursday, June 3, 2004 8:26 AM CDT
Hello and a good morning to all!!
Just wanted to put a note in today to let everyone know about the new upcoming event. The garage sale listed above is being put together by cousin Kim Emerson. She will be hosting this event at her home at 1217 Ohio St. in West St. Paul during the weekend of June 17 - 19. All proceeds will be donated to Maryah's fund!
Any items you wish to contibute to the sale can be brought to Kim and Brians home no later than June 15th. You may contact Kim at (651)450-9113 to make arrangements for drop offs. She may also need some assistance in running the sale, but I'll let her handle the details and I will get them out a.s.a.p.
Let's make this another success for Maryah, and get rid of some of those things we no longer need in our households...
"One person's trash is another's treasure!!"
Thank you all again for the everyday encouragement and support. I usually speak with or see Maryah daily and I know it means the world to her and all her family!!
God Bless!
Joanne/Auntie JoJo
Hey everyone,
I am at angie's house right know the kids wanted to see me and I wanted to see them. For lunch today we are having one of my favorites lasgona. Angie makes the BEST lasgona ever!!!! THANK YOU ANGIE!!!!
Well I better go hang out with the kids befor pool theripey. HAVE A GREAT DAY EVRYONE!!!!!!!!!
Maryah/Ryah
Wednesday, June 2, 2004 5:40 PM CDT
Hi again,
Well we are mid way through the week and already things feel busy and hustled. Tomorrow we start PT at St. Paul Kids. We have an early morning appointment and then the three girls are off to the Dentist (Maryah, Mo and Mom). It's always good to get our teeth cleaned...I love it. I don't know how the girls feel about it but I can't wait. Friday Maryah would like to spend her last "non chemo" day at Angie's with the kids so she can play and maybe do some baking with Angie. She always has fun there.
This weekend it is off to Grand Old Days with Dad (their annual tradition) and I am sure they will have fun. Next week starts studying, chemo and the beginning of our Summer.
Maryah won a free week of Summer Camp at DD's Dance Studio and Dianne wants to see her up on her feet and tapping away by August!!! What a goal huh? She'll get there. As her Dad says her confidence and hard work will get her there.
On the days when we feel this "cancer thing" is getting old we just smile and remember that we have so very much to be thankful for. The Lord has blessed us repeatedly through this battle and we feel very happy about that. We remember then to keep on going and not let it get the best of us.
Well...the two little girls are just getting out of the tub and so I better go dry them up and brush hair...by the way did I tell you? Maryah has hair coming in, and eyebrows. She is fuzzy. It is very cute. As she says "atleast we know it will come back".
Lots of Love and Blessings,
Rachel/Mama
Monday, May 31, 2004 9:58 PM CDT
The beginning of another week and another week closer to being done with chemo. Maryah will start round eight of chemo one week from today. We will meet with Dr. Slomiany at that time to determine if she will only be receiving five more treatments. If that is still the case, Maryah should complete her chemotherapy in August and be fully ready for school in the Fall.
We hope that this is the case and will update you as soon as we find out for certain.
We enjoyed some time at St. Columba on Friday when Maryah joined her school-mates for some fun on the last day of school. There was a "carnival" out on the playground and even a water fight started by staff and ended with water balloons thrown by the students at most all staff members. It was nice to see everyone and that Maryah could be part of that.
Maryah has started to sprout hair and eyebrows again since she has not had chemo in about six weeks now. It is fun to see that her hair and brows are coming back in dark. She was born with jet black hair so we are thinking that she may have darker hair now as it grows back. Unfortunately she will lose it again as we start chemo up but as she said today "atleast we know it comes back". Maryah always does look at the "up" side of things.
We will begin planning the Make-A-Wish trip to FL soon. Maryah and Morgan both talk every day about swimming with the Dolphins. I am so glad for them that after all the struggles they face that they will be able to enjoy that together and I will get to enjoy their smiles and laughter. It will be so good to see them smile and know that the worst is behind us.
Some days it is harder to remember that the sun will shine again and that this will be less of a struggle than it is now. Maryah and Mo remind me of this often.
This summer Maryah will be studying three days a week with a tutor (Mrs. Molde, a teacher from St. Columba). This will assist her in catching up in order to enter the fifth grade in the Fall. She has half of a year to catch up on and will need all the focus she can manage to make it through smoothly. I still hope to make summer a fun time for the kids and maybe even venture up to the Martinson lake home in Walker, MN for a long weekend. I hope we can manage. I would just like to make this as "normal" of a summer as possible.
I hope that each of you are well and have had a nice and relaxing holiday weekend. It amazes me that it is already Memorial Day. Time certainly does fly (even when you aren't having that much fun apparently).
You all continue to be in our daily prayers and we are thankful for all of the continued support and kindness we are presented with each day.
Please keep the messages coming, they are uplifting to all of us but especially to Maryah.
Love and Blessings,
Rachel/Mama
Saturday, May 29, 2004 10:53 AM CDT
Good Morning,
What a great day to just relax and spend time curled up with a blanket. This gloomy weather doesn't allow for much fun time outside but it certainly makes it nice for cuddling. The girls and I have been cuddling this morning and watching "Nemo" per Morgan's request. It's one of her favorites. It looks like the Memorial Weekend will be pretty unproductive as far as outdoor activities go due to our soggy forecast. Oh well! As I said more time to curl up, watch a good movie or read a good book.
We are coloring some pictures and enjoying the quiet of the morning.
Maryah is doing well. The pain is getting a little bit better every day. She is getting around on her crutches like an old pro! She is really using her upper body strength so she doesn't rest the crutches in her arm pits. We don't need pain or irritation in any other areas at the moment. She will be off of those crutches before we know it. She really seems to be able to put a fair amount of wieght on her "new" leg. It's great to see her strength. I am so proud of her.
I hope that everyone has a safe holiday weekend and enjoys the time away from work.
Lots of love and blessings,
Rachel/Mama
Thursday, May 27, 2004 9:16 AM CDT
Hi everyone!
It's me Maryah, and I'm out at my Auntie Jo's house. I had a great night and now the boys are gone and it's just Shayna, me and Jo. We are going to do a little shopping to run some errands for auntie Jo.
I've been doing a terrific job walking on my crutches! My uncle James carried me up their long stairway last night, but otherwise I've been doing it all on my own!
Later we'll do some scrapbooking, and have some more fun.
We're going to do my nails too!
Hi mom, dad, and Morgan...I'll see you soon!
Have a great day everyone and I'll write later.
Love,
sister/Maryah
Wednesday, May 26, 2004 4:47 PM CDT
Hello,
I just wanted to right a quick note and tell what is going on. Well today me and my dad just hung out for a little bit and then we went and picked up morgan and we went and got sandwiches and went to a beautiful pond and had a picknik. know we are just at mom's house wating for her to come home and then we are going to go to my aunty jo jo's house for dinner and I am going to spend a few nights out there so I can get out of the house and have a little fun. Well I don't know about you guys but I had a GREAT time at the fundraiser on sunday. There were so many people there and it was so amazing that they were all there for me. Thank you every body who helped get things organized and to the people who donated stuff for the auction some of the stuff was so cool I wanted it. Well I better scram and go pack my bag for jo's house. Have a good night!!!!!
Maryah
Monday, May 24, 2004 9:56 PM CDT
Good Evening,
Well, as you can see from our "headline", through your kindness, love and generosity we raised $9000 in Maryah's honor.
I have been trying all day to come up with the "right" words to express our thanks and gratitude. I have come to realize that there are no words that can completely reach that extent.
We are so deeply touched by all of you that show us love and support daily and in so many different ways.
I want to thank some of the people that helped to make this fundraiser "work". Thank you to Auntie Jo Jo, Uncle James, Dianne Martin, Angie Rein, Papa Denny, Nuna Elaine, Auntie Annie, Cousin Sarah, Auntie Ginny, Uncle Goo Goo(Sam)& Aunt Jess, Maureen. These people contributed their precious time and energy to make the fundraiser not only "work" but work smoothly. Without them it would have surely been a mess.
Also thank you to Sandy Sward, Carrie Miller, Auntie Annie, Cousin Sarah, Gramma Kim, Beverly Rowan and our friends at Option One (Aerotek) for either working at the bake sale, baking goodies or both. Your hearts obviously went into the time and effort you put into helping Maryah.
Thank you to Uncle Cliff and Aunt Connie Pukaite for coming in from Mequon, WI as well as Uncle Richard and Aunt Joanne Allen from Aptos, CA. It was such a pleasure to have you here with us and to spend this evening over dinner and good conversation.
I can't begin to tell you the names of every family member, every friend, every business and even every stranger that showed their support for Maryah. I will continue to put out lists of those that have contributed. You have each helped our family "stay afloat" in rough waters. Thank you one million times over.
I wish I could express how humbled I feel when I think of how each of you have so deeply touched our lives. You will forever be in our thoughts and prayers.
God Bless each of you as richly as He has blessed us. I pray in thanksgiving that our daughter is well and she will be cured. How awesome is the power of prayer? God's phone has been ringin' off the hook with this group.
Maryah will be resting up for a few days after this past weekend. She will continue PT this week and pretty soon we will have her up and cruisin' around. Her determination keeps us going and we will keep fighting that fight.
Lots of Love and Blessings,
Rachel/Mama
Saturday, May 22, 2004 4:50 PM CDT
Hello It's Maryah,
Just a quick journal to update the site. Right know I am at my aunty Jo Jo's house and the girls are being CRAZZIE!!!! And my mom and aunty Jo Jo are making stuff for the fundraiser so I thought I would right a quick note. I am REALLY REALLY exsided to were my dress tomarrow it's very very beautiful!!! I think it is so cool that all thoughs people will be there for me. It will really help pay for meds and my surgerey. Last night I went to my dance recitel of course I dident dance but I was working back stage and that was a lot of fun. My class did a dance for me and at the very begining the music started and it was very quite and one of the girls said ten thousand kids are diegnosed with cancer and one of them was are friend and then they started dancing and of course my mom and my nuna were in the adence sobing and I was back stage sobing. It was really beautiful. THANK YOU DD'S DANCE STUDIEO!!!!!!!!!!!
Well I beter go now. Have a great day!!!!!
Maryah
Friday May 21, 2004 12:30pm CDT
Hi there,
I am finally back in town and settled in again. Maryah, Morgan and I slept, all three of us, in my bed cuddling all last night. It is so hard to be far from them.
Zach is recovering from what we think may be strep throat and hoping/praying he will feel great again by Sunday.
Today we had a lot of great news that I can't wait to share with you. We've all been jumping out of our skin and smiling ear-to-ear...I am sure those reading will be too.
So, today we had our follow up appointment with Dr. Thompson and he told us that when the pathology report came back they reported that the tumor that was once there was 100 percent gone. He explained to us that this means Maryah's prognosis changes...her cure rate goes from 80 percent to 99 percent!! YEAHHHHHHHHHHHH!!!!!! Can you believe the miracles that the Lord provides. We all have prayed to Him for so long and so hard he heard us and he is curing Maryah! I can't begin to tell you how it felt to hear this news. I shed a few tears of joy and the smile on Maryah's face was AWESOME.
We will continue with the planned chemo as a preventive measure and then with continued prayer she will be fully cured and able to be done with all of these struggles. Praise God!!!
Also, Maryah heard from Make-A-Wish and she was approved for her trip to Florida to swim with the dolphins. Morgan is also excited for this because Maryah would like to share that experience with her little sister. They have such a precious relationship as evident by Morgan helping Maryah to get dressed and ready to go this morning. They are such special kids and Zach and I feel so blessed by them.
I hope that this journal update finds you all well and getting ready to join us for the "party of the year" on Sunday. It will be great fun and quite the celebration of life!
Lots of Love and Blessings,
Mama/Rachel
__________________________
As you may know, Keys restaurant is hosting their first ever Golf Tournament in Stillwater on June 29th and proceeds are going to the Maryah Tift fund. Those of you interested in playing in a fivesome - reserved for us - should call me ASAP for more info.
Daddy/Zach
Tuesday, May 18, 2004 2:12 PM CDT
Hello It's Maryah,
Today I woke up to a beautiful sunny morning with scrambled egg's and then my beautiful couisin shyana and my beautiful sister morgan who came for a little vist. I am in A LOT of pain so I am going know my dad will right later I promise!!!
maryah
WEDNESDAY MAY 19, 2004 9:27pm
Good evening to all!
It's auntie JoJo again, just wanted to give a little more update.
The last few days have been very hectic.
Miss Morgan, aka speed demon, has been having a good time with her cousin Shayna! They are more like siblings in their actions. They play well, but are not afraid of bumping heads. I wish I could bottle the energy they have together, I would be a millionaire!!
We have spoken to Maryah and Zach several times today and they seem to be doing well. Maryah continues to use her leg and is making progress daily. She and dad have been buzy helping friends Adam an Debbie move and get ready for an upcoming movie being filmed in town. Good luck Debbie!!
Just a quick thank you to all who have offered help on the fundraiser...I will be in touch with each of you over the course of the next few days!
I offer my prayers today for all of you who continually support this precious angel and her family, we couldn't get through each day without all of you!!!
God Bless!
Sunday, May 16, 2004 10:00 AM CDT
Hi,
It's Mama and Maryah here this fine Sunday morning. We just got in from outside! What a heavenly day! We enjoyed the sunshine on our faces and the breeze on our backs! Wonderful stuff. Then...we saw two unicyclers and Maryah decided that was her goal for today. So...Dr. Morgan (not the sister) decided that was a fine goal and released us from the hospital (or as it's better known by Ry "the dump"). We are on our way to get our unicycles now and we will be riding by soon so keep your eyes peeled.
In all reality today is a good day. Maryah walked on her crutches from the bed to the hospital hallway where she planted her rear in her wheelchair. We went for a walk outside and are now sitting at the computers in the hospital solarium and enjoying the beautiful view of our Mississippi river. We are on our way home as soon as we get dressed and sign out!
Blessed day... the fight is on and we will continue to kick cancer's BUTT!!! Maryah will continue this journal later...
Lots of Love and Blessings,
Mama/Rachel and Baby Ryah
To Be Continued....
Hi again,
I am just getting a quick update since Maryah has spent most of her day sleeping. We made it home. Maryah rode with her car window completely down and smiled the biggest smile I have seen all week. Getting in and figuring out how to make our house wheelchair friendly was our goal. We got things settled quickly and Maryah took a nice long nap. She had some time to visit with a few of her grandparents and then hung out while I took Morgan (the sister) out to her Auntie Jo Jo and Uncle James' house. Mo will stay with them and play with her cousin Shayna for a few days while I am out of town on a brief business trip. Not very good timing in my opinion but necessary. Maryah, Zach and Nuna will have all they can do to get that leg working well without Morgan's curiosity and constant need to "help". She is very concerned for her sister and pats her bald head frequently saying "feel better my Ryah, feel better quick." What a blessing we have in our girls.
Well...it's off to pack and get into bed. Maryah is now sleeping soundly and will be continuing this week with daily physical therapy appointments and lots of hard work to get going. Keep on praying she still needs the help!
Lots of Love and Blessings,
Mama/Rachel
Saturday, May 15, 2004 11:43 PM CDT
Last night (Friday) Maryah's school threw a fundraiser in her honor. It was a huge success! As you know Maryah could not attend because she is still in the hospital, but we recorded the event and played it for her. She was saddened that she could not be there physically, however, she felt spiritually connected as she watched all of her friends and St. Columba staff send their messages of love and support.
They had her name on billboards and her photo was everywhere. Tacos, soda and ice cream (donated from Izzy's) filled everyone. The DJ spun some music that the people of all ages grooved to and many individuals and busineses donated silent auction items. Every class at St. Columba donated baskets.
Thank you Mrs. Nelson (Maryah's 4th grade teacher), Mr. Donahue (Principal) and all of the staff and volunteers who made this event happen. It was a real PARTY!
Maryah said, "I am sorry I could not be there with you, but I will make it through this and I will be back with you all as soon as I can".
Take care and we hope to see you soon. Maryah will be ready for the 23rd! God bless...
Dad/Zachary
Friday, May 14, 2004 8:41 PM CDT
Hello it's Maryah,
This is the first time I have gotten out of bed and in a wheel chair I am in a lot of paine but I thought I would right a quick note. Today I am in a lot of pain they have making move my leg and it hurts but I just grit my teeth and some times when it is really sore I just have to screem!!! I am really bumed out today one because I am not feeling good and two I can not go to my school fundraiser but the GOOD news is that my dad is video taping it {YEAH}!!!!
while my mom and dad went to the fundraiser my nuna and Dene who I call na na and aunty came na na ROCK'S!!!!!!!!!!!
Wel I am going to head back to the bed but thak you for all your prayers and I LOVE you all!!!!!!!! Good night.
Maryah
Friday, May 14, 2004 10:07 AM CDT
Remember the Family Fun Night at St. Columba is Tonight!
____________________________
Good morning!
Maryah slept great last night. She was very talkative in her sleep. I coundn't make out all of what she was saying,but it sounded interesting. Part of it had to do with crafts and her friend Sarah. She would say, "should I make it red?" I'd respond "yes, honey, red is a good color".
Her pain has been on and off - even with the epidural. They think the needle in her back is moving around, since she is on her back, and moving effects what is numb and what isn't. BUT they are working with her by using other pain medications. They are taking her off the epidural in a half hour - once these med.'s kick in.
Last night we talked and talked and talked. She always loved a good conversation, but now - with her all of the medication, combined with being confined to a bed - she does not stop. I've had to tell her to stop and to rest the last few nights. Per her request, I've played her to sleep with the guitar...just like when she was little. I wrote a song for her when she was almost four years old and that is the one she has me play over and over.
Dr. Roby came is and and said, "How's my girl?" He must have such a unique attachment to whom he operates. Based on how she does today during PT, she'll be able to go home tomorrow or Sunday.
I better get back to her. Take care and God bless...
Zach
________________________________
Hi all,
Maryah has been working with her Physical Therapist again today. She was able to get into her chair and walk on the crutches a couple of feet today. She is scooting herself around in bed much better!
There is a long road ahead and I am seriously doubtful that Maryah will be home as soon as Saturday or Sunday. It is a nice/positive thought and we'd hoped for that but we have to make sure she can get up and around mostly on her own. Unfortunately she is a little to big these days for Zach and I too carry her around. Once we get her mobile and a bit more independent we will head home.
Maryah is really happy and proud with each new accomplishment and we will keep cheerin' her on. They say bone pain is the worst pain on earth so I cannot nor do I want to imagine how it must feel for her.
Maryah's friend, Dominic came to visit this afternoon and he reminded her that the "glass is half full" and that positive attitude and motivation are a choice. We will choose to make it every day we start.
Lots of Love and Blessings,
Rachel/Mama
Thursday, May 13, 2004 9:17 AM CDT
"A scar is just a tatoo with a better memory". - Auntie JoJo & Maryah
Good Morning and Happy Thursday!
We have a full day of physical therapy today. Maryah is feeling a bit more motivated this morning. I hope that will continue throughout the day.
Maryah got into her chair and sat there for a couple of hours before getting back into bed. She worked with PT last night to bend and straighten her leg. She felt proud of that accomplishment.
Maryah finally began to grieve the loss of her friend Maddie yesterday. She was able to express her sadness and feelings about Maddie "passing on". This was significant for Maryah and I hope that this will allow her to continue to share those feelings.
We have hung some pictures of Maddie in the hospital room to help Maryah feel closer to her and to motivate her. It is working thus far. It is hard to watch the children we have met suffer and ultimately pass on due to this terrible disease. We need to keep pressing into Maryah that she will be well again and this will be over soon. We have faith that this is true.
I will update again to let you know how the day is coming along. Maryah will have her crutches and maybe she will feel comfortable enough to use them. We need to teach her to use that leg, that it is okay to use that leg today.
Have a wonderful day and thanks for stopping by again. Please keep leaving messages... I am printing and reading them to Ry. She loves the encouragement and to know that people are out there pushing for her.
Love and Blessings,
Rachel/Mama
____________
Maryah slept great last night! They bumped up a dosage of one of her pain med.'s. I think she thought one of the doctors was cute! Too young - I know - but it could have been all of the medications she was on too. But I know my daughter and she was about to tell him how "beautiful" he was...but she mummbled her words and acted tired. I laughed quietly and so did he.
Her nurse Casey was very good with Maryah. He really took time to listen to her and make sure she was comfortable. He went the extra mile so I want others to know how much we appreciate him. Heather from PT just left and Maryah lifted her leg on her own many times. At first she cried because of the pain, but at the end she assured me they were tears of joy. She can't wait to show her mom and the other doctors.
All too often Rach and I give the usual answer that Maryah is doing fine - and she is - but she also has a lot of ups and downs and watching her go through this as parents is hard. However, she just went from a down to an up in minutes and her spirits are hopeful again. She insisted I write this entry right now so I'm following orders.
In those hard times she prays to God and talks with Maddie. It is humbling to see her in deep prayer - in direct dialogue. She told me the first week we found out about all of this, "Dad, I'm not scared because I believe in God". I've always envisioned Maryah leading us...and she's following God.
Maryah wants you to keep your faith and she'll see you soon. Many blessings...
Zachary
Wednesday, May 12, 2004 9:07 AM CDT
Good Morning!
It is already Wednesday isn't it? I can't quite believe that because it truly still feels like Monday. Time really stands still when you are waiting and hoping and working for your children to get through something tough. I know there are many out there who have had the same experience. Thank you for sharing those stories in support...they help immensely!
Today is a new day and I got a smile and a kiss this morning when Maryah woke up. What a reward after the last two days of pain. That will carry me through the rest of this.
At 6:15 (bright and early) Dr. Morgan (not sister Morgan but Dr.) came in and removed the drainage tube from Maryah's incision. Dr. Thompson just left us a short time ago with the news that Maryah's only restriction is her fear of pain. She is allowed to get up, move her leg, walk on crutches as possible. We have a list of goals hanging in our room today:
1. Move right leg
2. Try moving into new positions
3. Smile Lots!!! "Smile until you mean it!"
4. No screaming just squeezing
5. Sit in Chair
6. Go Potty on the toilet.
Sounds pretty basic but that's where we are at. Thank you for your understanding regarding the no visitors "policy" we will do our best to keep you updated through this. Maryah will need to concentrate solely on her anxiety relief and recovery.
The Physical Therapist is here now and we are going to accomplish goal number 5 right now. I will let you know how everything goes. Peace and Blessings. Thank you for your support and prayers, they help so much more than I can say.
Lots of Love,
Rachel/Mama
Tuesday, May 11, 2004 3:00 PM CDT
Hello again,
We are approaching late afternoon and just returned upstairs again. Maryah was brought downstairs and sedated in order to receive an epidural for pain control. Her pain has been quite severe and she got little to no rest last night and this morning.
Zach and I would like to request NO VISITORS this week. Our focus needs to be on Maryah right now and managing her pain and recovery. Maryah needs to be focused on resting her body in order to heal.
Zach or I will continue to update this site daily, sometimes even more than that to keep everyone up on the details.
Not much more for now but I will update very soon. Thanks for stopping in and keep leaving the great messages. I will be printing them out to read to Maryah soon.
Rachel/Mama
P.S. We are still working on entertainment for the fundraiser. If you have anyone/thing in mind that may be willing to donate their time/talent. Please e-mail Joanne Martinson at jmartinson@allvantage.com.
Thank you!
Monday, May 10, 2004 5:21 PM CDT
Hello everyone!
She made it and is resting in her room on the Pediatric floor of Fairview University Hospital. We just moved into this room moments ago where we will spend the next week or so. The surgery was very successful. It took four hours to complete (9:45am to 1:45pm). Recovery has been hard for Maryah so far. She is in extreme pain - since they say bone pain is the worst pain - and she is very emotional. We are praying that the Lord relieves her pain quickly. The nurses and doctors are working to get her under control as quickly as possible.
Dr. Thompson met us in recovery and stated that the surgery went extremely well and spoke to Maryah telling her "This will be a good leg for you." He is a man of few words but his genuine concern and care for her recovery speaks volumes through those words and his tone.
They removed 20 cm of Maryah's femur and replaced the entire knee. Zach and I saw an x-ray shortly after surgery and it is truly amazing what they have done. We call her Robo-Cop and Inspector Gadget now.
They asked Ry to wiggle her toes and she complied by wiggling them vigorously.
Thank you for all of your prayers and thoughts today, please keep them coming, she will need them to get through the pain she is experiencing.
We will not have visitors for a few days - until we have found how to manage Maryah's pain effectively. Even then we will push for Maryah to rest, sleep and get well. We will update everyday so you can all keep up on her progress.
All of our love,
Rachel/Mama
Zach/Daddy
Monday, May 10, 2004 6:13 AM CDT
Hello,
It is a very early morning but I am all dressed and ready to be cancer free!!!! I think it is the funneist thing I was praying to God last night and I asked him for two things and those two things were so my cold would be gone and I would not be scared and those things came true my cold is gone and I am not scared. Last night we went to my Auntie Jo's house for Mom's day and had hot dog's and when my Mom said a "relaxing rest of the evening" in her journal, well I don't think it was so relaxing there was a small tornado, the sky turned green and it was very windy and all of a sudden the sirens went off so my uncle James stepped outside and far away but heading to us was a tornado. It got to us and in her back yard a very small tornado dropped it was kind of freaky. Well I am going to finish getting ready for my big day. I am so excited. Mom and Dad and I have to drop off Mo and then we will go to the hospital to get started. I am sure Mom will tell you all how it went when it's all done. HAVE A GREATTTTT DAY!!!!!
God Bless,
Maryah
Sunday, May 9, 2004 1:25 PM CDT
Happy Mother's Day to all you wonderful Mothers out there! Today I am blessed to celebrate a special day with my two beautiful daughters. They brighten this and every day for me!
Today started early with the Race for the Cure. Although we only entered in the 1K we ended up walking the 5K. Mom (Nuna), Jo Jo, Zach, Angie, Reenie, Elle, Nick, Maryah, Mo and I all went the distance and really enjoyed the fun of walking with all those wonderful people for such a great cause.
We are now spending the rest of what we hope will be a relaxing day out at Auntie Jo Jo and Uncle James' house. We will grill lunch and spend some time outside (weather permitting).
It is a beautiful day to prepare for surgery tomorrow. Maryah will take a nice bubble bath in the big jacuzzi tub out here and we will go home a bit later to pack our bags for the week at the hospital. It will be a new experience to be at Fairview University instead of St. Paul Children's with our friends on 4200. We will be making some new friends on 5B. One more day and that yucky tumor will be history. Thank the Lord!
Maryah has come a long way in just a short time and she amazes me a little more each day.
We will update after surgery tomorrow so that everyone can hear of the success.
We are storming heaven with our prayers today and getting "all prayed up" (thanks Uncle Joe) to prepare. Please join us once again in offering up prayers and thanks to the Lord for the success of the surgery and in thanks for the lessons along the way.
Love and Blessings,
Rachel/Mama
P.S. Please continue to pray for Maddie's family, for their peace after the immense loss of our Angel Maddie.
Please also pray for our friend Rebecca who lost her Dad after he suffered a massive stroke. Their families will remain in our daily prayers. We will continue our prayers for full and speedy recovery for Dan Delisi and his family as they begin their journey with Chemotherarpy and Radiation. Lord watch over them all!
Thursday, May 6, 2004 9:04 PM CDT
The Eve of Maryah's 10th Birthday...
Hard to believe that 10 years ago I gave birth to this beautiful young lady.
I will never forget the day. I started getting contractions early Friday morning while in Sociology class. Zach and I walked the hallways of Cretin-Derham for our entire lunch hour attempting to determine if they were "real" contractions. Nothing major, no worries...
At 4pm I dropped Zach off to work and by 6:30 I picked him up again barely able to drive up Grand Avenue because my contractions were so painful.
We sat and patiently timed the contractions...10 minutes apart, 5 minutes and finally at 10:30 p.m. we finished packing my bag, drove to pick up Zach's bag and off to the hospital we went. There I slept with the magic of the medicine until 5:00 a.m. which is the point I woke up with hard contractions and received an epidural. I then rested peacefully until about 9:30 a.m. Zach and Nuna went for down to the cafeteria for some breakfast and determined it was "time to have a baby" and returned to the room. Auntie Jo Jo stood close by to make sure I was comfortable and held my hand in place of my own Mother.
At 10:05 a.m. Maryah Therese Emerson-Tift came into this world with a head full of jet black hair and the most beautiful blue-green eyes. She was perfect and we couldn't stop staring, listening to her every sound and showing her off to each new visitor.
May 7, 1994 was a day to remember always. It was one of the happiest days of my life. I was/am blessed with the most graceful, strong and precious daughter. I couldn't have asked for anything better.
I thank the Lord today as I do everyday that he brought her to this world and blessed Zach and I with the opportunity to raise her and to have her teach us just what we always seem to need to learn.
Beautiful Maryah, you are the sunshine that warms my day and the stars that brighten my nights. Today is an exciting day and I am so proud of you. Daddy and I love you more than you might ever know.
HAPPY 10TH BIRTHDAY BEAUTIFUL GIRL!!!! YOU ARE SO AWESOME!!!
Thank you to each of you who share in our love for Maryah every day. Thank you for showing your love and support. Your prayers, thoughts and words of encouragement keep us going every day.
Celebrate Life!!!
Love and Blessings,
Rachel/Mama
___________
Maryah, Mo and I are heading to Key's for some of Maryah's favorite breakfast. We woke-up with the birthday song, streched and we're off. We're talking about the day she was born and how beatiful that time was for everyone. I feel blessed to be her father. If you can, please share a story with her - either through e-mail, on the phone, or at any of the gatherings so she hears something besides mom and dad telling the "same old stories".
Through all of this celebration of life we just found out that Maryah's friend Maddie passed-on last night. Now she is Maryah's angel. Maddie and her family are in our prayers. Please keep them in yours as well.
Love and blessings...
"Daddy"
Thursday, May 6, 2004 12:58 AM CDT
Hey guys,
Right know I am at angie's house we just got done with lunch and laying the kids down and now me and angie get some peace and quite well Reenie is still up but she is one of the quite one's but she also knows the rules of being quiet when the kids are sleeping. I am having a GREAT day with the kids we are just hanging out and doing some crafts angie showed me how to make napkin holders they turned out really well.
In a little bit the kids will wake up and we will have snack ang is making puppy chow I know it's not really for dogs it's just the name for it it is REALLY REALLY GOOD!!!!!!!!!!! Reenie is so cute she always wants to sit by me and anywhere and I mean anywhere I go she comes with me that even includs the bathroom but when I go in I tell her she has to wait out in the hall way but she just stands behind the door and knocks on it untill I come out.
For lunch today we had a hot dish it was really good for vegey we had peas and carrots and for a fuit we had melon and strawberries I LOVE strawberries! Well I am going to go help ang now but I hope you have a GREAT day!!!!!!!!!!!!
Love Maryah
Tuesday, May 4, 2004 3:57 PM CDT
Hello everyone,
Just a quick message to give you the week's news. Maryah's counts came way up as of Monday except for Hemoglobin. We are still working to get that up. We will have more counts done on Thursday.
We are getting closer to the big surgery day and so far things are going smoothly. It looks like this may actually happen this time.
The unfortunate thing that comes with having the surgery on 5/10 is that Maryah will miss her St. Columba benefit on 5/14. We will send a video message for them to play however so she can "be there" in spirit. Don't let that stop you from going and having FUN. It sounds like great fun, especially for the kids with movies, etc and Izzy's is supplying the ice cream. Don't forget that adults are welcome from 9-midnight for beer, pulltabs and dancing.
Maryah won't however be missing the big event on Friday!!! Our baby is going to be TEN YEARS OLD!!!!! Unbelievable!!! It will be a fun filled day and lots of friends to keep the day (and night) fun and exciting. Can you imagine breakfast at my house on Saturday morning? Well, that is the funnest part of being a Mom is to have all those friends over to the house. I hope it continues throughout the years. We will have many more celebrations...birthdays, graduations, going off to college (Harvard or Juliard would be nice), wedding and baby showers. Can't wait!!! Well...okay I can wait but it will be exciting and fun when those times come. DREAMS are a wonderful thing.
We are still praying for Mr. Fuhrman (Rebecca's Dad) and Mr. Delisi (Adam's Dad) and of course we are getting "all prayed up" (thanks Uncle Joe) for Maryah's big week.
Please stop in and leave a message, Maryah is still looking at the site several times a day to see who has been here to say "hi".
Lots to do this week and it is such a beautiful week to do it...sunshine and warm weather are just what the Doctor ordered.
Keep in mind that Komen's Race for the cure is on Sunday (Mother's Day) and a bunch of us are participating in the 1K walk at 10:00 a.m. I believe you can still register online for the walk if you are interested. I will be going out to pre-register and pick up our shirts on Saturday afternoon so let me know if you will be going and I can pick up your info.
Have a great evening and a fantastic week!
Love and Blessings,
Rachel/Mama
P.S. Check out the new pics!
Sunday, May 2, 2004 7:56 AM CDT
Hello,
I just woke up a little bit ago and I thought I would write a little note and say hi. It is a really beautiful day out, I haven't been outside yet today so I don't know if it is cold or if it is hot. It sure is sunny and I love sunny. I can't believe it is almost my brithday. It's in five days. I invited all the girls in my class and they can come, I invited my cousins Katlin and Arielle but I am not sure if they can come, I invited my friends Tiana and Bria and they can come and last but not least my little sister Morgan {yippie}. For my brithday party we are going to go see a movie that comes out on May seventh and then we are going to come home and have pizza and play games or something and who ever want's to sleep over can. Well I need to go watch my little sister Morgan but have a great day!!!!!!!!!!!!!!!
Love, Maryah
Hi,
Hope everyone is having a pleasant and relaxing Sunday afternoon. I am adding to Maryah's journal to request more prayers. Our dear friend Dan Delisi (Adam's Dad) is in the hospital after surgery to remove a mass they found in his brain. This was a sudden turn of events for the Delisi family and they need our prayers. Dan's MRI results will be back on Wednesday (approx) so we will pray that everything will be easily resolved for him. Pray for Gina Delisi who is about to have her first baby and the rest of the Delisi family as they pull together during this time. We love you guys and we will keep the prayers coming. Hang in there!!!!
Thanks everyone for allowing us to use this site for the occasional prayer request. It seems that the power of this group's prayers seems to pull through even in the toughest of times.
Lots of Love and many blessings,
Rachel/Mama
Saturday, May 1, 2004 9:54 AM CDT
Good Morning!
I hope you are all enjoying this beautiful day, sunshine, warm breeze. We are so blessed!
Morgan and Daddy just left for tumbling class and Maryah and I are on our way to pick up her "party dress" from the lady doing the alterations. It's pretty fancy...can't wait for all to see it on May 23rd! We are also going to meet Auntie Jo Jo for some scrapbooking fun at Archivers. It is "National Scrapbooking Day" so we will be putting some of our favorite pictures on some fun pages. Can't wait!
Maryah came so close to giving herself the G-CSF shot last night. We will try again tonight and let you know when she does it. She is SO BRAVE!!!! Maryah is always so willing to try new things, even when they are scary. Praise the Lord! I hope that you all enjoy the day and the remainder of the weekend. We are on the countdown now for surgery so let's storm heaven with our prayers for Maryah's successful surgery and recovery with no complications.
Love and Blessings,
Rachel/Mama
Friday, April 30, 2004 6:20 PM CDT
Hello again,
I thought I would get you all an update. Maryah is not feeling very well right now and is just hanging out on the couch and getting ready for Friday night movies.
We had a trip to the Hem/Onc Clinic today to get checked out. Maryah has been holding on to this cold/sinus irritation for several weeks. They gave her some IV fluids and antibiotics. She will also be on an antibiotic for the next week to get her well. The Doctors are treating her as though she has a Sinus Infection.
Maryah's counts are way down so she also has a yucky tummy and leg pain to deal with. Today has been a drab day but we are looking forward to those counts coming up so we can have some pre-surgery fun and time to get well.
This weekend will be pretty low key and I am sure we will enjoy some good books, movies and scrapbooking.
Well, I hope this update finds each of you well and on your way to a fantastic weekend.
Please continue to pray for our friend Becca, her father and family as they work forward through her father's massive stroke. Thank you!!!!
Love and Blessings,
Rachel/Mama
Thursday, April 29, 2004 1:49 PM CDT
Hello,
How is every body today?? I am not doing so well my tummy is upset and I have a lot of leg pain. My counts are down so that is probely why I am not feeling good. Today me and my nuna are just hanging out watching movies and talking this morning we went to Michaels craft store so I could get some scrapbooking stuff scrapbooking is one of my favoret things to do when I feel good. My aunty Jo taught me how to to it.
Last night we had a BLAST at the baseball game sara in my class did get to come and so did my grandpa Denny we had hot dogs and popcorn and malt cups it was pretty cool. Well I am going to go take a little nap. I hope you have a GREAT day!!!!!!!!!!!!!!
Love Maryah
Wednesday, April 28, 2004 2:54 PM CDT
Hi,
I know I already did a journal today but I have a lot more to tell you. Today me and my nuna went to the Raptor Center and I got to see a bird having surgery and I know it sounds nasty it did to me to but it was actually kind of cool. Then we had to go get a couple of meals for my mom and dad so they don't have to cook anyawy the lady who we pick then up from works at a library aspecially for fire fighter's to learn how to be fire fighter's and I meet the frist women who was a capten of the St.Paul fire department. In a little bite we are going to the baseball game {yeah}!!!!!!!! Well gatta run catch ya later.
Maryah
Wednesday, April 28, 2004 8:35 AM CDT
Goodmorning,
How is everybody today?? I am pretty good my leg is really sore and I still have that dumb cold. my nuna and I are going to the Raptor Center to see all the birds. And tonight my mom and I and my little sister are going to the base ball game we got six baseball tickets so I can take three people with and I am gonig to bring my grandpa and maby my friend sara if she can go I will call her when she get's home from school.
Well I am going to go know have a GREAT day!!!!!!!!!
Maryah
Tuesday, April 27, 2004 9:58 AM CDT
Goodmorning,
How is every body today?? I am ok I have had a couple of headaches this morning and my tummy is MAD but otherwise I am GREAT!!!!!!!! Today is another quiet but fun day at home I am either laying on the couch quietly or watching a movie. Last night my dad and I and my friend Sara went to dinner and then a prayer service at Benilde St.Margaret's were my Uncle Bob works.
Me and my sister just got done watching The Haunted Mansion it was preety funny my mom bought it for us a couple of days ago. Well I need to go make a plan with my nuna to see what we are going to do today. Have a great day!!!!!
Maryah
__________________
Hello everyone, its Maryah's dad. I just want to add a big thank you to everyone who has been praying for Maryah and helping us out. People have been coming to us with ideas and offering ways to pitch in to help carry the load. All of you are making this road a little less bumpy. We'll be free from the weight of this soon enough.
Yesterday Amy Bomberg (aka Bomb) informed me that Key's - the restaurant where she manages - is hosting their 1st Golf Tournament and they decided to donate all of the proceeds to the Maryah Tift Fund. THANK YOU "BOMB" AND THE ENTIRE KEYS FAMILY!!! They threw in a five person golf package for any golfers I would like to have attend the event. If you are interested please call or e-mail me and I will discuss further details and put your name down. Also, Will Ola from Benilde-St. Margaret's high school called me today to say he found someone to donate 4 "really good seats" for a Vikings game for the silent auction part of Maryah's fundraiser on May 23rd.
We look forward to seeing everyone at an upcoming event or two to say thank you in person. Maryah continues to feel your love and support and prays for all of us. Thank you, take care and God bless...
Zachary
_____________
Hi! It's Mom now! I want to second the thank you to those of you out there helping us out! Thanks again "Bomb". We are excited about the golf tourney! The posters look great.
Also, I would like to request prayers from all of our visiting friends and family. My dear friend Becca recently left for Montana where her Father had a major stroke. He may need a miracle from the Almighty to make it through this. Please pray for that miracle and for strength and peace for Becca and her family as they are dealing with this blow.
Lots of Love and Blessings,
Rachel/Mama
Monday, April 26, 2004 2:03 PM CDT
Hello,
How are all of you doing today?? I am GREAT me and my nuna are just hanging out well actually she is out side planting flowers and I am hanging out. My daddy is sick so I am going to be with my mom for a couple of days But thats just fine with me I love both my mom and dad the same amount and I am happy at eather one's house.
I am going to watch a movie in a little bit and have a little after lunch treat. Well I am going to go now but have a GREAT day!!!!!!!!!!!!!!!!!!!!!!!!!
Maryah
Sunday, April 25, 2004 1:52 PM CDT
Good Afternoon!
It is a lazy Sunday afternoon, Maryah, Mo and I are still getting over colds and just spending some time cleaning house, doing laundry and Maryah just made Angie's famous Pizza Bubble Bread. We are just trying to get well so maybe we can enjoy this nice weather! Other than the colds Maryah is feeling pretty well. We enjoyed some time at the first of many bar-b-ques at Aunt Theresa and Uncle Ken's house. Of course, Theresa made AWESOME food for supper and we enjoyed every bit. There were lots of friends and family to see and visit with. Lots of fun!
Daddy is at home getting over feeling "yucky" too so we are holding him up in prayer today that he feels back to full strength very soon! Lot's of love Zach/Daddy!
We will update as the week goes on as we get closer to Maryah's surgery! Hopefully counts will be up soon so Maryah will have longer to feel good and have fun!
Love and Blessings,
Rachel/Mama
Thursday, April 22, 2004 4:57 PM CDT
Hello again,
Today we finally got sunshine and warm weather. We were all so happy for that. Maryah finished up round seven of chemo today with a great attitude, a huge smile and infectious laughter! Now we just need to get well for surgery and pray (as well as make several phone calls) to make sure surgery goes through without a hitch this time.
This is the "witching" hour in my house. Morgan is running around frantically with a bag of crackers in hand and refusing to give them up, even with the bribe of supper being ready soon! Maryah is giving the old "What's for supper? When's it gonna be ready Mom?" I always wondered why my own Mom was a little more calm after supper was finished and kitchen was cleaned. I supposed I should pick a better time of day to update this journal!
I want to thank all of our friends and family again, although I am sure most of you know that time is limited and has kept us from sending "Thank You" notes we are SO VERY THANKFUL for all you are doing to help us along the way. The continued support and practical gifts that you share with us daily! I always liked to think I was independent but I find in times like these it is such a blessing to have a circle of family and friends to help and sometimes even just "take over". I am so proud to know each of you. It might just take me forever to list everyone's name and how they have helped so I ask you, please remember that anyone who has helped in ANY way you are remembered daily and we simply cannot adequately express our thanks in words! I only hope we have the opportunity to return the favor someday (under different circumstances of course).
Love and Blessings,
Rachel/Mama
P.S. For our fellow Days of Our Lives Fans, Maryah and I are keeping up as much as possible and I have one word for you...WORTHLESS!!!! hahahaha :)
Wednesday, April 21, 2004 2:42 PM CDT
Good Afternoon,
It is another gloomy day in St. Paul. I sure wish the sun would come out.
Today we had day one of round seven of Maryah's chemo. This round consists of Vincristine, Cyclophosphamide and Doxirubicin. Maryah will only have Doxirubicin tomorrow and hydration through Friday and then done with round seven...sounds easy enough right? Not quite. Unfortunately we've learned the fancy names of these chemo drugs but the minute they pump into Maryah's body you see her shrivel back down to a sick little girl with headaches, nausea, stomach pain, the whole nine yards. You know what's amazing though? Maryah's spirit SHINES THROUGH IT ALL!!!!! You'd never know (other than a completely bald head) that this nine year old wonder has Cancer. The Lord has wrapped us in His arms and is carrying us the entire way. Today, when Maryah was at the clinic she had to have her Port reaccessed. When they originally did this in the morning her skin was numb from using Emla cream however the access wasn't working properly and the medicine wasn't being delivered as it should. When Maryah's nurse Kathy said she needed to reaccess Maryah, she got a little sad because she was anticipating the pain it would bring. She then raised her head and said to her Dad quietly "Jesus went through a lot more pain than this so I think I can handle this". Amazing, she is truly graceful and teaches me each day what kind of a person I want to be. Today I would like to thank each of you for coming to visit us here and remind you the strength of the little girl you are visiting. I also want to thank the Lord and Zach for giving me my two AMAZING daughters! I am so happy today, the disappointment has fizzled out and Maryah has reminded me of what is truly important.
Love and Blessings,
Rachel/Mama
Tuesday, April 20, 2004 12:43 AM CDT
Hello,
How are all of you today? I am pretty good I have a cold though and it doesn't feel too good. I am kind of bummed out that my surgery isn't till May 10th. But every thing happens for a reason. I love waking up every morning and looking at my web page and seeing all the new notes I have gotten. Me and my mom are just hanging out watching are soap together. We both are sick so it's just me and her so Mo and Dad do not get sick.
Tomorrow I might go to school and see my second grade teacher, Mrs. Hummell she is subbing for fifth grade while my teacher is at another school watching the kids work. She was one of my favorite teachers. Thank you for all of your prayers they mean a lot to me and my family. Have a GREAT GREAT GREAT GREAT DAY!!!!!!!!!!!!!!!!!!!!!!
Maryah
Tuesday, April 20, 2004 7:32 p.m.
Hi, it's me, Mom!
Maryah and I are still working to get over the colds we picked up. We have quarantined ourselves to the house and we are starting to get really BORED!!! We are watching Simon being REALLY mean on American Idol. Such a horrible show but hard not to watch. We are waiting patiently to watch our friend Maddie on HGTV. Her room is being redecorated by Decorating Cents. Watch if you get a chance.
Just an update, Maryah will be starting another round of chemo tomorrow. We cannot let her go another two plus weeks without any chemo. We need to be cautious. So... on to the clinic first thing tomorrow morning. This round is the two day kind and only takes about an hour.
Although yesterday was a disappointing day we are smiling and keeping in mind that we have to have faith. The Lord is still moving and we know He is holding us in His hands and will guide us through this journey each step of the way.
We are always thankful for each day and do our best to find that peace beyond understanding.
Love and prayers to you all and we will keep you updated this week.
Love and Blessings,
Rachel/Mama
Monday, April 19, 2004 5:50 PM CDT
Hello,
I wanted to update you on the status of Maryah's surgery. We met with Dr. Thompson this morning and he spent this morning determining how quickly we could get the prosthetic we will need for Maryah. It turns out Maryah will be taller than he originally thought we her growth is complete. He had to then order a prosthetic that will be easily adjusted approximately every six months or so until she is done growing. It is a simple, painless procedure. The unfortunate news is that the prosthetic is not available "on the shelf" and needs to be made especially for Maryah. The new date for surgery is Monday, May 10th. This was difficult to hear because of all of the planning we put into today and today has been hard on all of us. We will get through with our faith and the Lord's help. He knows the needs of our hearts far better than we do.
We will have a better plan for the next couple of weeks after we hear from Dr. Slomiany tomorrow. It is possible that she may need to continue with chemo while waiting. We will see.
Please keep up the prayers we are in need of them right now. We are having some difficulties with Maryah's health coverage (long story) and can use prayers for strength and patience.
Thanks to all of you who are out there keeping up with our journey and leaving your supportive messages so we know you are there. It helps, more than you could imagine.
Lots of Love and Blessings,
Rachel/Mama
Sunday, April 18, 2004 9:05 PM CDT
Hey guys,
I just got back from my BEST friend Sara's house. We were a little nervous about the thunderstorm but we just watched the news and we felt better. Tomarrow we are going to meet with Dr. Roby and we might get a date for the surgery. I was kind of disappointed that my surgery was postponed but kind of happy at the same time. But everything happens for a reason. Today me and my mom also went to get my dress hemmed for my fundraiser. So me and her got some one on one time together so that was nice. Well I have to go get ready for bed now but we will write again as soon as we know somthing. Have a GREAT night and GREAT day tomorrow!!!!!!
Maryah
Sunday, April 18, 2004 11:33 AM CDT
Good Morning,
Well, we got some dissappointing news this morning. Dr. Thompson called us from home to explain that because he didn't have the films for Maryah's leg length he wants to postpone the surgery. He is unsure when exactly we will do it but we will meet with him tomorrow a.m and determine that. I will know more by tomorrow but it sure is disappointing to be thrown off schedule again.
I guess one way or another I will learn that life is not always how we expect it. Patience is the only key I can come up with.
For all those praying, please keep praying! We will keep you updated as we get more information.
Love and Blessings to all,
Rachel/Mama
Friday, April 16, 2004 8:48 PM CDT
TGIF!!!
I am so, so glad it is Friday and my baby is coming home tonight. We are getting all prepared for next week. Morgan and I did not get to the Twins game tonight but enjoyed our first bonfire and grill out of the season. It is so beautiful outside. I am sure not more beautiful than 92 degrees and sunny as it was when Ry and Zach called me from the poolside in AZ. They were rubbing it in just a tish!
We have a full weekend with Mo's tumbling tomorrow, Maryah has another scan to do (they forgot to do it on Tuesday) to measure her leg length and then we will pay a visit to Auntie Jo and Uncle James for another afternoon of fun! I think there is just way too much fun going on!!!! YEAHHH!!!!
Sunday, Morgan will be leaving for an overnight excursion to a hotel in Owatonna with Angie, Mark and Kids. They have a water park and bunk beds for the kids to have plenty of fun with. That will keep Mo busy while her sister has her surgery. Thank the Lord for dear friends like Mark and Angie to put up with not just their own three munchkins but one extra from our house. They will have lots of fun I'm sure. Angie and Mark are SAINTS!!!!
Well...Mo needs a brief nap before we head to the airport to pick up our favorite people. She is just a bit excited to see Ry and Daddy!
Ryah will update yet this weekend before her surgery and we will keep you posted on the procedure and it's success.
Lots of Love and Blessings,
Rachel/Mama
P.S. Check out the new photos from Ryah's trip with Dad to AZ!
Thursday, April 15, 2004 8:36 PM CDT
Hello,
Today I think I had the best time of my life!! Me and my dad went in a jet and flew over the Grand Canyon and it it was BEAUTIFUL!!!!! We will put pictures in the photo album.
The colors were amazing! And the peeks were too! My daddy was really scared but I just thought it was FUN!!!!! There were also other kids so I had someone to chat with. They dropped us off and we went to the IMAX theater to see a film about the Canyon. Then we got on a bus and went to lunch and had spaghetti. We went to a place called the village and there were shopping places and beautiful views! Well I am going to hand you off to my daddy now have a great night!!!!
Ps.THANK YOU UNCLE JIM FOR THIS GIFT!!!!!!!!!!!
Maryah did a good job at explaining our day, except for the part when she said I was scared. She's been a bit of a joker today. Our plane hit some turbulence on our flight to the Canyon - just past Sedona. It was pretty bad so Maryah white-knuckled it and looked like a dear in the headlights with her big blue highbeams staring straight at me. But she was so taken back by the beauty of the views of mountains and lakes and red rock that she was still able muster-up the strength to utter the words, "This is SO amazing, Dad". I smiled and thanked God for this time with My Ryah.
Every minute has been savored. Its like time slows way down in Arizona -almost seems like time is doubled. Maryah's energy peaked and has not subsided and she has had NO yucky tummy for days. She's been able to be the Maryah she was before all of this started. She's been able to show "Maryah", but this trip I've had my Champ the whole time.
Have to go now, Uncle Jim just cooked soem shrimp and steak - Maryah's favorite. He even went out and bought her favorite steak sauce. Love and blessings to all...
Dad/Zach
Thursday, April 15, 2004 2:28 PM CDT
Hello to all from Arizona!
Maryah and Zach departed early this a. m. from the Scottsdale airport after one of Uncle Jims famous breakfasts of "one-eyes". If you would like to get a beautiful picture of her plane over the Canyon and read her schedule of events please go to: www.grandcanyonairlines.com and then click on the Deluxe Tour. When I went to wake her at 5;30am she opened her eyes, smiled that magic smile,gave me a kiss,and said "I think I'll fly over the Grand Canyon today." The wonderful lady at the at the airline was especially moved by Maryah. Her name is Kris Burks and made it her mission to see that Maryah gets the most special VIP treatment possible today.We just spoke on the phone and she can't stop speaking about the profound influence Maryah had on her. We all know that don't we!! Jim and I will be picking them up at 5pm and aftter her steak and shrimp dinner (Maryahs special request) she will update this journal. We have completely enjoyed having this opportunity to have this special child of God here with us these few days. Love to all! Aunt Shari, Uncle Jim and Grandmere
Wednesday, April 14, 2004 11:57 AM CDT
Hello,
Guess what? I am in Arizona. My mom and dad surprised me this morning they said that we had to drop my mom off at work and my dad had to use her car while his car was geting fixed. Then my mom and mo droped me off. And now we are here in ninety degree weather and it is beautiful. Tomorrow me and my dad are going on a private jet to fly the Grand Canyon. It was a gift from Uncle Jim and Aunt Shari. Thank you for this wonderful gift!! Me and my dad are headed to the mall to get an outfit for tonights dinner with Grandmere and then we will come back and lay in the sun. We have only been here for maybe an hour and I am already having fun!! Well I have to go now but have a great day!!
4:15 P.M. CST - Journal From Minnesota:
Good Afternoon!
If you could have all seen the look on Maryah's face this morning when we got to the airport and I said "OK this is your stop. You and Dad are getting on a plane to AZ right now!" Maryah's little jaw dropped to the ground. We said our goodbyes and waved to Ry as she and Dad entered the airport for their three day excursion. Tomorrow they will enjoy their flight tour of the Grand Canyon and Maryah will have plenty of visualization tools to bring back for surgery on Monday. Good News! Friday Mo will enjoy her first Twins game of the season (my little baseball fan). What a fun and busy week.
Lots of Love from Minnesota!
Mama/Rachel
Tuesday, April 13, 2004 7:50 PM CDT
Hello there!
It is late Thursday and we just got home from what was a very long day but a day that came with GREAT news for Maryah and all concerned for her!
The Radiologist called Dr. Slow Bananas and had to confirm her diagnosis because he could not detect a tumor in her leg?!?!?!?! What little bit of tumor is still there is so small that even a trained eye had a difficult time seeing it.
"By my stripes you will be healed" The Lord promised it, we all prayed for it and it came to be. Maryah's tumor is almost completely gone!
They will still perform the surgery on Monday and that is good. The chemo will continue as a precautionary measure but she is being healed as we speak. PRAISE THE LORD ALMIGHTY!!!!! What a blessing!
We will continue to update through the week and weekend. Thank you all so much for your prayers and support. It is HELPING!!!! We love Maryah so much and Zach and I are so excited we could jump right out of our skin. What a miracle we received. It didn't quite hit us right away but it has now begun to sink in and we can't stop talking about the miracles the Lord is bringing us. YEAH!!!!!!
I can't print in words how joyous I feel. Oh, and wait until you see some of the fabulous pictures Nuna took at the hospital today. They are fun.
Also, please pray for our new friend Maureen. We met her at dinner with Papa tonight. She just finished her chemotherapy in December for Ovarian Cancer. We are praying that she does not relapse as almost 80% of Ovarian Cancer cases do. She was our angel today and we were so glad to meet her. We hope she will come and visit our site and keep in touch to let us know how she is doing.
Well... time to get my crazy little girls ready for bed and winding down. Hope everyone is having a blessed day!
Love and Blessings,
Rachel/Mama
Monday, April 12, 2004 5:08 PM CDT
Happy Monday!
Another GREAT day for Ms. Maryah or as we have nicknamed her lovingly "Spazzy McGee". Maryah's apetite came back just in time for her to eat Easter dinner yesterday and she certainly did stuff herself to the max topping it all off with a piece of French Apple pie! It was a wonderful day and we are so glad she is feeling good. Her blood counts came back VERY high today so this week is bound to be a good one for her. Tomorrow we head to Children's for a full day of tests to prepare for the surgery next Monday. They will do an MRI, bone scan and some other testing to measure the length of prosthetic bone they will need to use. She will end the day with a pre-op appointment at Hem/Onc and then Integrative medicine at Children's Minneapolis. Lots to do tomorrow.
Morgan has her 1st swimming class tonight. I guess shaving my legs before getting in my swim suit might be a good idea? Saturday is Mo's first tumbling class and she will start T-Ball in June. We are trying to keep life "normal" for her and make sure she's got lots of things to keep her busy little body and mind going. I think she will have fun.
For those of you who would like information on how to make a donation for the silent auction or raffles at the May 23rd Fundraiser please contact either Zach or I via e-mail and we can get information out to you quickly. Thanks for inquiring.
Well... enjoy the rest of your day and we will update again tomorrow when we know more after testing.
Our prayers are with all of our family and friends and hope that all those who are struggling feel the love and healing powers that our Lord provides us. We would especially like to continue to pray for Jim Martin (knee surgery).
Love and Blessings,
Rachel/Mama
Sunday, April 11, 2004 10:20 AM CDT
Hey HAPPY EASTER,
How is everybody doing today? I am having a GREAT day!! Last night my sister went to my Dads house and I stayed with my Mom so this morning we woke up and went to 8:00 mass to hear my Papa Denny sing and then we went out to breakfast. And now we are home and I got my easter basket with a lot of candy and goodys. Today I will go with my Dad for an hour to his family's house and then I will go with my Mom to her family's house to eat and visit. well I have to go now, my Mom is calling for me again.
Have a great day!
Maryah
P.S. We would like to ask all of our family and friends out there who check in daily to pray for our friend Jim Martin (Dianne's husband) as he will be having knee replacement surgery at United Hospital this week. We will storm heaven with our prayers!
Love and Blessings,
Mama/Rachel
Saturday, April 10, 2004 7:33 PM CDT
Hello!
We are enjoying our Saturday out at Auntie Jo Jo's house. Uncle James brought us out to Mansetti's for some supper and we went for a ride in the "red truck" to look at a beautiful 6,500 square foot mansion that we have decided would be a good purchase so that the girls and I can move in to half of the house and Papa Denny can live in the guest apartment. It has an eight car garage...can you even imagine. It's fun to dream though!
We are about to have some popcorn and watch a movie for a bit.
Maryah is feeling better, her counts are coming up and she is feeling the typical bone pain that comes after the G-CSF starts to kick in and the WBCs start to come up. She'll be in tip top shape for Easter Sunday.
As you can see Zach has updated the home page with a list of upcoming events for April and May. We hope that you can join us. I will also add that Dianne Martin is having a bake sale at the DD's Dance Recital to support Maryah's fund. I will add those dates to the list!
I hope everyone is having a blessed weekend. Let's pray that the weather warms up soon! No more snow please!
Blessed Easter,
Rachel/Mama
Thursday, April 8, 2004 6:11 PM CDT
Hi again,
We are still home! Praise God! Maryah had a pretty good day. While she rested at home for most of the morning the afternoon brought us to a very good movie. Nuna, Auntie Jo, Maryah and I went to the theater to see The Prince and Me. That was a great movie. We ate popcorn and gummy bears and enjoyed the movie. That will be a movie we will have to add to our collection when it is out on DVD.
Maryah is still having pain and upset stomach but her counts are at the point that they should be coming down now. Hopefully by the end of the weekend/early next week they will start to come up and she will have at least one week to feel good and see her friends.
Papa Denny brought a very nice gift from a friend at St.Matthew's church, Mark Bauer. Mr. Bauer grew out his hair and had it cut and donated to Wigs for Kids in Maryah's honor! Thanks Mr. Bauer! What a super gift.
This weekend brings Easter and the rememberance of what that means for each of us. I feel blessed to be spending the day with family and will only miss having my dear Brother Greg, Sister, Kim and nieces with us to share the day. We will be thinking of them though! I send love to all of our family out there and pray you have a very special and family filled weekend.
I will update tomorrow after Maryah's clinic appointment for blood counts.
Love and Blessings,
Rachel/Mama
P.S. M. Elton it is pronounced like Mariah only spelled in honor of my late mother Mary. Thanks for visiting Maryah's site.
Wednesday, April 7, 2004 8:53 PM CDT
Hi again!
We are back home again tonight. Maryah is sleeping peacefully with her sister in their own bed (well...actually Mom's bed as usual). Atleast they are comfortable!
Maryah had all the tests necessary and nothing came back abnormal so we decided it would be best to come home and get Maryah's mind off of "feeling cruddy". She also had a red blood cell transfusion today due to low Hemoglobin. Maryah came home about 6pm and I put her and Mo in the wheelchair and we went for a nice walk in the warm, windy weather. We came home and Maryah and Mo both had a nice hot bubble bath with some candlelight and got comfy jammas on for the night. We had pancakes for supper (Grandma Mary's special supper time pancakes) and then read our magazines and some of our book! Now we are off to bed and ready for tomorrow. What a nice calm evening.
Please keep praying for Maryah to feel well these last couple of weeks before surgery. I keep praying that she will have lots of energy and spunk!
I will keep updating throught the week. Thanks for the continued messages, Maryah really loves when there are bunch of new messages to read. Thanks a ton!!!!!
Love and Blessings,
Rachel/Mama
Tuesday, April 6, 2004 7:03 PM CDT
Good Evening from our second home!
We are here again on 4200 at St. Paul Children's. Maryah had to come back into the Hem/Onc Clinic this morning due to some worsening of her pain. We ran another series of tests and came back with very few answers. We are here inpatient to get Maryah's pain under control. I am unsure at this time how long Maryah will be here. Hopefully only through tomorrow.
Tomorrow morning we will be getting an ultrasound of Maryah's belly as the pain seems to be centralized in that area and could be due to some worsening of her gastritis. We are very unsure but everything seems to be in good shape otherwise. Lungs and heart are doing fine and Maryah is healthy otherwise and we will be working hard to keep that up so she is ready for surgery.
So...I am sorry to say we won't be inviting visitors at this time. Please stop by to leave Maryah lots of messages on her guestbook though so she feels connected. She does have access to the internet! Yeah! We also have access to a balcony outside for some fresh air! It's so beautiful outside it is a crime not to enjoy it.
We are watching a good movie and will do our best to get some sleep tonight. Hopefully we can get Maryah comfortable enough to sleep.
So glad all is well with her for the most part and just wish we could resolve this pain for her. Shouldn't Mothers and Fathers be given a magic wand at birth to make the ouchies go away?
Mo will be with Dad for some one-on-one time tonight and she had a good time here riding the little Fisher Price Car around the hospital hallways. She misses her Ryah! Poor Mo!
Well, just wanted to update you on Maryah's condition. I will keep you updated through this week.
Love and Blessings,
Rachel/Mama
Monday, April 5, 2004 9:31 PM CDT
Hi again,
Well...another long evening in the ER for Ms. Maryah. At about 6pm Maryah was experiencing some shortness of breath and chest pain along with dizziness and some abnormal vomiting. We decided to take her into the ER and have it checked out.
They did an EKG, chest x-ray and drew some labs and found absolutely nothing. Somedays we come out more confused than we went in. I am so very thankful that there is nothing wrong with her but it certainly doesn't explain the extreme pain and inability to catch her breath.
We were discharged just around 9:00 and Maryah is on her way to bed. We'll be keeping a close eye on her.
Morgan was lucky enough to be whisked away by her wonderful Nuna for some dinner and outdoor exploring and Papa Denny saved the day with some dinner for Zach, M and I. Thanks to you two for saving the day again.
We are glad Maryah is home. We will be watching her closely and keeping her at home for the next two weeks with limited visitors in order to keep her healthy for her surgery on the 19th.
We love you all and thank you for your messages and support. More updates to come as the week goes on. Mom's tired too and off to bed.
Love and Blessings,
Rachel/Mama
Sunday, April 4, 2004 8:16 PM CDT
Good Evening,
Well it's nearing the end of the weekend and we will start another new week tomorrow. I feel blessed for each day we are given.
I wanted to give an update on our visit with Dr. Roby Thompson on Friday. Dr. Thompson is the surgeon who will be performing Maryah's surgery on Monday, April 19th.
Dr. Thompson gave us a couple of options for bone replacement.
Our first option is a bone graft (donor bone). This is an option that requires the ligaments to be attached to the donor bone. This option would require six months of recovery before Maryah would be able to bare any weight on the leg. In the longer term, Maryah may need to have a longer bone later as growth continues and that would require an entirely new bone graft and six more months of reovery.
Our second option is a bone prosthetic made of stainless steel. This option requires no attachment of the ligaments. The recovery period is four to six weeks before Maryah can bare full weight on the leg. In the future Maryah can have length added to the prosthetic to accomodate growth and the recovery from that would be a far shorter period of time. Within 15-20 years some component of the prosthesis would need replacement.
The risk of infection is the same for both at less than one half of a percent.
Dr. Thompson has done both of these surgeries for the past 25-30 years. He explained that he used to be more partial toward the bone graft however looking over the long term results of both options today he would choose the prosthetic.
Ultimately the decision is mine and Zachary's however he explained that in our shoes he would choose the prosthetic for Maryah. He also explained that she would be up on crutches within two days of the surgery and on her feet by week six at the latest. He feels she will have full ability to use the leg for dancing and anything other activities she chooses.
Therefore we have chosen to go with the prosthetic replacment for Maryah. We feel we were able to make a well informed decision with all the information we were given and that this will be the best option for Maryah.
This next week will consist of a series of tests to conclude how much the tumor has decreased in size. We will have an MRI, bone scan to determine the current size of the tumor and the length of the prosthetic that will be required.
Dr. Thompson thought that just by feeling Maryah's leg that the tumor has shrunk considerably which will make surgery much more successful. The chemo is working!
The surgery will be performed at the UofM (Fairview University) on Monday, April 19th at 8:00a.m. Maryah will be recovering on their Pediatric Floor (5B)for five to six days.
We ask that you storm heaven with prayers for the success of the surgery, for all those health care providers involved in her care and for Maryah's well being through this whole ordeal. I know you have been praying non-stop but I thought I would offer some specifics.
Maryah finished her sixth round of chemo on Saturday afternoon with her friends (nurses) on 4200. She has felt pretty miserable for the past several days and has been throwing up pretty much all day. We'll keep praying baby girl that you feel better!
I will update later this week regarding the benefit for Maryah. The benefit is scheduled for Sunday, May 23rd from 2-9 pm at The Bluffs of Mendota...all other information is yet to come. I will try to download the flyer onto the site. If you have any questions or suggestions please feel free to e-mail either myself or Zach.
Love and Blessings,
Rachel/Mama
Saturday, April 3, 2004 5:23 PM CST
Hey guys,
I hope you all are having a GREAT weekend!! Today I went in for chemo and so now I am not feeling so well but thats normal. I also know the date of my sugerey April 19. I am very nurves but very happy at the same time. mo's little friend nana is over and they are playing and having blast and I am on the chouch wathing TV. Tonight we will order some pizza and get a couple movies so that should be fun! well I have to go now but we will keep you updated. God bless and have a great weekend!!!!!!!!!!
Maryah
Friday, April 2, 2004 7:48 AM CST
Good Morning,
Well we made it to Friday with the promise of a beautiful and warm weekend!
Maryah and Dad had a FABULOUS time at the concert last night. The music was good but no luck on getting backstage to meet Ms. Keys. Although her music is such "therapy" to Maryah that according to Zach as soon as she sat down to play the piano Ms. McGee fell fast asleep! Now that's good music as far as I am concerned. They had a great time and it sounds like it was a really amazing concert!
Ms. Morgan had a bit of hard day yesterday with a couple of falls at both the park and while playing with her friends. Her poor face is a wreck and she is all scratched up. While Dad and Ry went off to the concert Mo and I went and picked out her first bike "a pink bike" per Mo's request. Dad and I decided that we couldn't wait for her birthday like she requested or she might not be able to ride it since her birthday is not until NOVEMBER! So Mo waited patiently while Papa Denny put her new pink bike together and then she made her very first trip around the very same block I made my first bike adventure on. She doesn't quite have the coordination down to "pebble" and steer the bike at the same time. We will work on that more this weekend during our nice weather. She is looking forward to showing Dad her new helmet and her "pebbling" this morning.
We are off to the surgeon shortly and then day four of chemo at the clinic. Tomorrow Ry will have to go to the floor (4200) for day five of chemo and then she is done. We should have a better idea today of the date for surgery after talking to Dr. Thompson. We'll keep you updated!
Enjoy your weekend and the blessing of beautiful weather!
We will let you know what the surgeon has to say.
Love and Blessings,
Rachel/Mama
Thursday, April 1, 2004 5:21 AM CST
Good Morning All!
Up with the birds this morning. I heard them singing outside of my bedroom window...a sure sign of Spring! It is so nice that we don't have to put on 15 layers of clothing to walk out the door now. It certainly saves time.
Well, my little munchkins are sleeping soundly and I imagine they won't wake up until they here me getting the coffee on and taking my shower and then the peace and quiet of the morning is OVER!!!! Hahahaha! The joys of motherhood, I wouldn't trade it for the world.
Maryah is very tired. This round of chemo has just wiped her out. She was in bed and sleeping by 7:45 last night. She had the darkest circles under her eyes yesterday I have ever seen. I felt so badly for her because she was just so sleepy and had a yucky tummy to boot! No fun, this chemo stuff.
Zach and I meet with the surgeon, Dr. Robi Thompson tomorrow morning. We will discuss all of our options for Maryah's surgery. We have a list of questions prepared that once we get answered we will share in a journal entry. Dr. Thompson is the Doctor that is overseeing Maryah's care. He has a very good reputation and we have been told by many that we are blessed to have him performing Maryah's surgery. I am comforted some by knowing that. We are still estimating that her surgery will be the second or third week of April. We know that Maryah will be immobile for approximately one week and she will not be able to bare any weight on the leg for three months. She will undergo extensive physical therapy to help in that recovery as well. That much I am confident enough to share.
Well, to all of you out there, have a fantastic day and enjoy the sunshine. I do see it coming up out there.
Many blessings,
Rachel/Mama
Thursday, April 1, 2004 5:21 AM CST
Good Morning All!
Up with the birds this morning. I heard them singing outside of my bedroom window...a sure sign of Spring! It is so nice that we don't have to put on 15 layers of clothing to walk out the door now. It certainly saves time.
Well, my little munchkins are sleeping soundly and I imagine they won't wake up until they here me getting the coffee on and taking my shower and then the peace and quiet of the morning is OVER!!!! Hahahaha! The joys of motherhood, I wouldn't trade it for the world.
Maryah is very tired. This round of chemo has just wiped her out. She was in bed and sleeping by 7:45 last night. She had the darkest circles under her eyes yesterday I have ever seen. I felt so badly for her because she was just so sleepy and had a yucky tummy to boot! No fun, this chemo stuff.
Zach and I meet with the surgeon, Dr. Robi Thompson tomorrow morning. We will discuss all of our options for Maryah's surgery. We have a list of questions prepared that once we get answered we will share in a journal entry. Dr. Thompson is the Doctor that is overseeing Maryah's care. He has a very good reputation and we have been told by many that we are blessed to have him performing Maryah's surgery. I am comforted some by knowing that. We are still estimating that her surgery will be the second or third week of April. We know that Maryah will be immobile for approximately one week and she will not be able to bare any weight on the leg for three months. She will undergo extensive physical therapy to help in that recovery as well. That much I am confident enough to share.
Well, to all of you out there, have a fantastic day and enjoy the sunshine. I do see it coming up out there.
Many blessings,
Rachel/Mama
Tuesday, March 30, 2004 6:46 AM CST
Hey guys,
I hope you all had a GREAT weekend! Yesterday I was not feeling so well and I came home and went and read all of my notes and they all made me feel beter so thank you so much!!! In a couple of hours I will go In to clinc and get my chemo. Last round!! I hope this one goes well I'm pretty sure I will live don't you think. I hope you all have a GREAT day! check out the new picks they are very cool.
Maryah
P.S. Just a quick note from Mom...incase all you OLLLLLD High School friends come back to check in. I love you all and thank you so much for leaving messages. I hope you will leave more. It is very nice to hear from you. Hope to see you all on May 23rd!
Monday, March 29, 2004 4:09 PM CST
Good Afternoon All!
Just got back from the clinic with Maryah. Her blood counts are back up! Yeah! We will start chemo tomorrow and she will continue through Saturday. We will start hydration tonight so we can get started with chemo bright and early tomorrow morning. Home care will come out tonight to access Ms. Maryah's port and get the saline pumpin'.
Ms.Speed (otherwise known as Morgan or "the spark") went to see Dr. Jaeger today to find out why she is having some foot pain and limping. We are never to careful these days. Doc says she is just fine and no reason to worry. We will just keep an eye on it and make sure it doesn't get any worse. Probably just normal kid stuff but again we are just a bit over cautious.
It is a busy week for all but we are on our way! Maryah will be off to the Alicia Keys concert with her Daddy on Thursday night and they are looking forward to that fun time together.
Thank you again for all your wonderful messages and prayers they are always needed and always appreciated.
Love and Blessings,
Rachel/Mama
P.S.New fun pictures again today!
Sunday, March 28, 2004 1:35 PM CST
Good Afternoon,
Today is another chilly, overcast day but perfect for a visit to Auntie Jo Jo's to see beautiful pictures of the warm FL beaches. We are also working on some plans for the fundraiser so we can get all the info out to everyone on the site. Today I was listening to one of my favorite CDs by Sade. There is a song on that CD that since the first time I heard it reminded me of our girls and I thought I would share the lyrics in our journal today so you can catch a glimpse.
Quietly while you were asleep
The moon and I were talking
I asked that she'd always keep you protected
She promised you her light
That you so gracefully carry
You bring your light and shine like morning
And then the wind pulls the clouds across the moon
Your light fills the darkest room
And I can see the miracle
That keeps us from falling
She promised all the sweetest gifts
That only the heaven's could bestow
You bring your light and shine like morning
And as you so gracefully give
Her light as long as you live
I'll always remember this moment
If you have a chance listen to the song it is a beautiful melody to go along with the beautiful words.
Maryah is feeling pretty good today beyond some pain in her legs and throwing up last night. Never quite know what we're gonna get from one day to the next so as I said you just "roll with the flow". One minute to the next. Maryah will not start chemo tomorrow but probably Tuesday or Wednesday.
Hope everyone has enjoyed the weekend and is refreshed for the new week. Blessed day to all.
Love,
Rachel/Mama
Saturday, March 27, 2004 4:22 PM CST
Hello and Happy Saturday!
Although it is a bit gloomy outside it is a nice day to relax and unwind from the week and watch good movies or read a good book. Since Maryah and Mo are with Zach this weekend I am doing just that today! How nice to breath...
Zach, Maryah and I went to look at The Bluffs of Mendota today. We have confirmed this to be the site for Maryah's fundraiser. We have the date and the place set in stone for all of those who would like to mark their calander in advance. We will be having the fundraiser (as I mentioned) at The Bluffs of Mendota in Mendota Heights (they do have a website and I will get it for you) on May 23rd. We are thinking the event will be from 2pm until 9pm. Maybe only 8pm but we are unsure right now. Just wanted you to mark your calanders for what is to surely be the years "biggest" event! Haha! We are definately looking forward to this celebration and have received so many generous offers from those who want to support Maryah. There will be a silent auction and we are quite sure some appearances from our local sports, news and maybe even music celebrities. We are working diligently to make that happen. I will be certain to get the flyer posted on the site soon so you can get all of the details. In the mean time if you have questions or suggestions please post them on the site with your contact information so Zach and I can reach you.
Last but not least Maryah is feeling quite wonderful today. She is "bored" she said and wants to get out and conquer the world today. We took her to visit her dance friends at DD's and had a chance to visit with our dear friends Dianne and Alesia. What fun! Maryah was a little nervous to spend the night away from home at a hotel with her Grandma but her sister gladly went in her place and that made Maryah happy. It's also nice for Morgan to get a little extra attention too! So Maryah got some one on one attention from her Daddy. My dear friends brought me out to the John Mayer concert last night and I got some "Mom" time too. So far it's a great weekend with lots to look forward to.
I hope that each of you are having a great weekend too!
We love you and you are in our prayers today and every day!
Love and Blessings,
Mama/Rachel
P.S. Look at the new pics!!!
Friday, March 26, 2004 6:42 AM CST
Hey it's me Maryah,
How are all of you today?? Today I have a lot I need to do. My Nuna is coming over to watch me well so we can have fun. and then I am going to age's house for her son Nick's birthday. after that I am going with my grandma for dinner I really wanted to go to the hotel with her but I just am to scared and I also want to be with my dad tonight. But I think it is so cool that I get to go to the Alicia Keys conncert!!!! well got to go but we will wright soon. Have a great day!!!!
Maryah
Wednesday, March 24, 2004 9:35 PM CST
Hello again!
I just wanted to write a bit to say hello and update. Maryah is feeling pretty good but low energy. She and the Morgan girl are have been fast asleep since 8pm. It's amazing how quiet my house gets when they go to sleep! The transfusion helped immensely and gave Maryah not only a boost of color in her cheeks but also a small boost in energy. She is struggling with some mouth sores and some wierd things going on with her feet but for the most part it's just the regular old wierd stuff going on.
Maryah was honored as Student of the Month at St. Columba today. She was able to join in for a celebration and receive her certificate. Pretty COOL!!!!
I have had the pleasure to read some websites on Caring Bridge tonight that have touched me in a great big way. Maryah has been in contact with a friend named Maddie (www.caringbridge.org/mn/maddie) and she is super and through her site others have contacted us. Most recently Princess Celeste and her Mom. What amazing and precious children. There are so many lives touched by cancer and I can't begin to tell you how much it has taught me NEVER to take one moment for granted. Tonight I am asking for prayers for our new friends Maddie and Celeste. Visit their sites also if you have a minute. You can't help but be touched. These sites and the messages that come from all of you are so endearing to us the family of these beautiful children but much more so to them!
We love you and will give another update after we get Maryah's counts tomorrow afternoon.
Love and God's Blessings,
Rachel/Mama
Tuesday, March 23, 2004 6:58 AM CST
Good Morning!
It is a beautiful, sunny Tuesday morning. I am enjoying the early morning hours with my beautiful girls having Angie's delicious muffins and coffee or milk (in the girl's case).
Maryah had her first blood counts of the week and they are pretty yucky! Maryah will need a red blood cell transfusion this morning due to her hemoglobin being at a 6.9 right now. That would explain headaches, dizziness and the pale around the gills look Maryah is sporting!
The numbers/counts shoot down and usually shoot back up within a few days thanks to the G-CSF. Hopefully Maryah will be feeling good as new shortly!
We are patiently awaiting the return of our precious Auntie Jo Jo and Uncle Nums, Dorian and Shayna. We miss them a great deal and Maryah is waiting for her scrapbooking partner to get back with new pictures from the trip to Tampa. Sounds like they had fun at Busch Gardens yesterday and now we are on the countdown for their return on Friday. We are spoiling ourselves by driving Uncle Nums' fancy truck around and the girls are really enjoying watching the movie "Spirit" on the built in DVD player that is in the truck. Living the "high life" literally... that truck is like being in a bus! FUN!
Well...blessings for a wonderful day and a wonderful week for all of you!
God Bless,
Rachel/Mama
Monday, March 22, 2004 9:23 AM CST
Good Morning All!
Happy Monday! It is a beautiful "almost spring" day! Maryah had a good weekend and felt well. She has been using her muscles more than usual so she is a bit sore today and I believe her counts are coming down about now so she is feeling a bit more miserable then usual. We will get counts at the clinic today so we should no this afternoon if that is true. Maryah begins her sixth round of chemo next Monday and then on to surgery after her counts come back around.
Last night on the 10pm Kare 11 news there was a special on Caringbridge.org (the organization that sponsers this site for Maryah and many other children). It was so special to watch and many of my personal thoughts were expressed by the parents that were featured. A local MN woman started Caringbridge for a friend who had some difficulties with her pregnancy and wanted a centralized "information center" for updates regarding her baby, Brighid. I was touched when one father expressed "Each time I go to the site and there is a message from friends or family it feels as though I am getting a great big hug". That really descibes the support we feel on this site to a tee! That is the reason I encourage the messages for Maryah. They really do see us through.
The same father and his wife wrote a song together in honor of their daughter Grace. The lyrics described Caringbridge. One of the lines was when I just don't have the energy to pick up the phone I look at my caring bridge". It is so special to know that we are not alone and that there are so many from around the world and right here in our own community that care so deeply.
Thank you! Thank you! Thank you!
Love and Blessings,
Rachel/Mama
Sunday, March 21, 2004 7:43 AM CST
Hey it's me Maryah,
Last night I had the best time! My friends farrah and cynthia came over so me and morgan could play and my mom and her good friend steave could finish painting her room. Then my grandma Kim came and got morgan so that I could really get to play with my friends. after all of that we all went out for supper me,my mom,cynthia,and farrah,oh and steave.when we where done with supper me and my mom went to TARGET to get pillow cases for her bed it was fun having a littel time with just my mom.
can you tell I am feeling beter I can. I hope you all have a GREAT DAY!!!!!
Maryah
Friday, March 19, 2004 6:40 PM CST
Hey it's me Maryah,
I hope you all had a great day! I sure did. today i went to my sisters daycare we had a great time. My sister make's my fell beter when ever I fell sick!!!!!! I am really glad she is my sister! in a couple of days me and my grandma are going to a hotel for the nite to have a little fun and so I can get out of the house. Today Angie my sisters and my dacare lady made one of my favorite lunches fish sticks and freanch fries she is one of the best cooks in the wourld!! Rite now I am at my grandpas house for dinner we are have pizza it ROCKS!!!
well I have to go I hope you all had a GREAT day!
good night!!!!!!!!!!
Love Maryah
Friday, March 19, 2004 4:54 AM CST
Good Morning All!
TGIF!!!! This week has gone by fairly surprise free (knock on wood). Maryah is feeling pretty nauseated but mostly doing pretty well. Maryah and Morgan have been hanging out with Dad most of this week. The girls come back to me today and I can't wait. I have been an insomniac all week and working at the strangest hours as I am sure you can tell from looking at the time!
Maryah will start round six of chemotherapy a week from this coming Monday. According to Dr. Slow Bananas she will need to get her counts up to where they normally are to start chemo and then they can do the surgery. We should be able to plan it about one week in advance. There won't be too much notice but we know we are shooting for mid April. The surgery will take place at the U of M. Dr. Robi Thompson will perform the surgery. So many have confirmed for us that he is "the best of the best". He is not a very social Doctor but he is very focused and attentive to the issue at hand.
Maryah is working on visualization and connecting her brain to the health of her body. She is really doing well with that and has come a long way. Maryah receives a drug called G-CSF to stimulate White Blood Cell production in the form of an injection. She receives this daily for about one week. In the beginning Maryah would use Emla Cream (a topical numbing cream) on the site of her injection. As of two weeks ago Maryah has decided she "doesn't need the Emla Cream" because "it really doesn't hurt that bad when you are calm".
So proud of her!
Well... I hope that each of you have a wonderful day and a relaxing weekend.
Rachel/Mama
Wednesday, March 17, 2004 3:57 AM CST
Good Morning All!
This fine morning brings us beautiful snowfall, although it is no fun to drive in! I am in working early again due to an inability to sleep once again. I figured the quiet of the nursing home would give me an opportunity to get some things accomplished before another day of hustle and bustle. The drive in was beautiful with the freshness of the snow. It made me realize that every day is a new day and as Maddie said in her guestbook entry (with my own little spin) "If God brings you to it He will bring you through it."
Last evening Maryah spent in the ER due to some problems with her port access. The needle came out a bit and so fluids were not getting in but we were getting some blood return on her line. There was also some swelling around the port site that caused a reason to have a chest x-ray to be on the safe side. The x-ray came back fine and there was no problems to speak of. Maryah got home late and into bed finally after 10pm.
We never quite know what each day will bring our way but we live by our motto (taken from the book "No More Bad Hair Days")
"Cancer is NOT for sissies"!
Let me confirm Maryah is NO sissie! Her Dad and I on the other hand... well that is another story (hahaha).
Today is amazing as is every day and I can only say that I can't wait to see what the day will bring us and I will pray that it will be wonderful and that Maryah will feel good along the way.
Drive safely on your way to wherever it is your journey brings you today. You are each in my thoughts and prayers this morning.
Love and Blessings,
Rachel/Mama
Tuesday, March 16, 2004 2:54 PM CST
Hey it's me Maryah,
Today I went in for chemo and it did not go so well. I do not feel good at all - not like I ever feel good - but worse than normal. But thank goodnes they could let me go home so I could sleep in my own bed. My dad is out side doing his rounds right now and I am making myself some lunch and after that we will go pick up mo morgan. Well I hope you all have a great night I will up update you tomorrow. Have a great night!!!!!!!!!!!!!!!!!!!
Maryah
Monday, March 15, 2004 8:24 PM CST
Well... it is now Monday evening and although I already wrote this morning I wanted to give you all an update and some good news from today.
Yesterday put Zach and I into a bit of a panic which I didn't want to share at the time due to the lack of information we were given. One of the home care nurses had told us after they drew Maryah's counts that they found "abnormal" blood cells or immature blastys as they refer to them. The concern was that these were cancer cells within Maryah's blood. There was no Pathologist on yesterday being it was a Sunday so there wasn't any confirmation at this point. We received word from Dr. Slow Bananas this morning that this is indeed typical of someone recovering from chemo and who is on G-CSF to stimulate White Blood Cell growth to have these immature cells and there was simply no need to worry. The Doctors and Nurses were very concerned that this premature and incorrect information was given to us and they are handling this on their end. Of course I am more than happy that there is nothing to worry about and no panic necessary and that this Nurse now has learned through this experience what to and NOT to say to cancer families.
Now... for the good news, Dr. Slow changed Maryah's chemo drug (Doxirubicin) which normally takes 48 hours to run to two 30 minute infusions. Maryah is home with her Dad and Mo and resting comfortably in her own bed tonight. She will no longer have to have inpatient chemo therapy. She will receive another 30 minute infusion at the clinic tomorrow and has to be accessed and attached to her hydration solution and anti-nausea meds but that will be all finished by Wednesday and she can have a whole week and a half off of chemo! YEAH! Praise God for moving in her life.
We are slowly but surely making this journey into a smooth one and learning so much along the way!
I hope that you are all having a beautiful Monday and that your week is a blessed one.
Thanks for checking in and remember you have all of our love and thanks!
Rachel/Mama
Monday, March 15, 2004 6:27 AM CST
Good Monday Morning!
This fine day starts round five of chemo for Maryah. Maryah's counts were right where they need to be in order to get started today. Zach and I will get her to the hospital this morning and get her settled in. Dad will stay with Maryah tonight and I will stay with her tomorrow night. Hopefully if we get rolling quickly this morning we will be out of there in the afternoon on Wednesday. We keep working on making this a smooth process.
Maryah had a terrific weekend and said every morning "I feel great Mom!" with a tune of excitement even though by looking at her we knew she wasn't feeling as great as she told us. She is really working on "mind over matter". She is doing very well with that. I am so very proud of that little girl. She is amazing and her great strength brings me to a place of strength myself. I am also glad that Maryah is very good at letting us know what she needs and when she is not feeling well and needs rest. This has been an ongoing learning experience for us all. Praise the Lord this fine morning for life lessons and for family and never ending support!
My wish is that each of you have a blessed week and that you find time for a quick prayer and message to Maryah in the guestbook.
Thank you for your love and support. You and your families are in my daily prayers as well!
Love,
Rachel/Mama
Saturday, March 13, 2004 8:40 AM CST
Hey it's me Maryah,
Today me my mom me and my wonderful littel sister are go going to my antie jo's house for her birthday. my antie jo is so cool! so are all of you to! I am not feeling to well because my blood counts are so low but I think I feel good enough to go to my antie jo's. Well I have to go but God bless and have a GREAT day!!!!!!!!!!!!!!!!!!!!!!!
Friday, March 12, 2004 10:02 AM CST
Good Morning All,
TGIF!!! I just got off of the phone with Kathy (Maryah's nurse at the Oncology Clinic). Maryah's counts are low today (as pretty typical for this time of the week). Her total blood count is 110 (normal is 2500) so she is considered neutropenic. Her white blood count is only 500 (normal is about 10,000), Hemoglobin is at 7.9 (normal 11-13) and Platelets are 70,000 (normal 250,000). Now...what all this means is that Maryah is feeling a little low in energy and she is very suceptible to infection and illness. We are extra cautious about germs and are diligent in handwashing. Infection control is the name of the game at the Tift residence.
Home care will come out on Sunday afternoon to draw blood for counts again. This will give us a better idea of whether or not Maryah will begin round five of chemo on Monday or later in the week. If her total blood count (ANC) is up to 750 or above and platelets are above 75,000 she will begin on Monday as planned. If they are still low she will most likely be delayed until Tuesday or Wednesday. She is currently receiving her G-CSF injections daily which stimulate the production of her White Blood Cells and get all of those good ol' cells up to the numbers we like to see for her. We will watch her Hemoglobin espcecially because at 7 and below they need to transfuse red blood cells to keep her from becoming anemic.
I know... I know... lots of medical terminology and it is all very overwhelming, trust me it has been a tremendous learning experience!
So to put it lightly just pray for Maryah's counts to come up where they need to be and for chemo to run smoothly for her next week.
I will journal another update this weekend to let you know when she will be going in. This round of chemo is inpatient at Children's and typically has lasted for approximately two to three days.
Morgan has been finding some good fun in typing on the site. She has enjoyed some time with Maryah this weeek and harassed her as well. The job of all little sisters.
Speaking of little sisters...this little sister would like to wish her precious big (much older sister) a beautiful and HAPPY birthday! Happy Birthday Jo Jo! Looking forward to some time with you this weekend. Maryah can't wait to share her new scrapbook pages with you!
To all of you who are keeping up with all this, thank you and bless you for continuing to send your encouraging and fun messages. They are good for our spirits (especially Maryah's).
Lots of Love and Blessings,
Rachel/Mama
Thursday, March 11, 2004 9:27 AM CST
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morgan
Wednesday, March 10, 2004 8:27 AM CST
Good morning,
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morgan
Wednesday, March 10, 2004 8:27 AM CST
Good morning,
How are all of you? Today I have decided to go to my sisters daycare because I am not feeling to well today but io want to have a fun day anyway. I have also decided to have my GCSF without emla cream. Later on today if I start to feel better my Nuna will pick me up after lunch and we will go to her work at the raptor center so I can see the beautiful birds.
Well I have to go get dressed. Hve a GREAT day!!!!!
Maryah+Ryah
Tuesday, March 9, 2004 5:23 PM CST
Hey it's me Maryah
Today I went to school and I had a GREAT day! This morning I told my dad that i never get a break of not felling and luky me today was my break.I have no cramping no nausea and my leg deos not hurt.Tonight I am going out to supper with a couple of Friens we will be going to Khan's mongolian BBK
well i have to go
buy!!!!!!!!!!!!!!!!!!!
Sunday, March 7, 2004 4:13 PM CST
Hello and Happy Sunday!
I hope everyone is enjoying a relaxing and family filled Sunday.
Maryah finished round four of chemo on Friday afternoon at the clinic. She was able to part from her "friends" the saline bag and BAD drip (Benadryl, Ativan and Decadron for anti-nausea). Maryah had a tought week feeling pretty miserable on and off and one trip where she was actually admitted to the hospital for the pain in her abdomin. The CT scan, liver tests and blood cultures all came back showing us nothing different then before. So, confusion about the pain is still there but we are doing our best to control the pain for her. The nausea is still there but Maryah is working through that with "brain power" and prayer. Seems to work!
On Tuesday morning Maryah had the opportunity to be part of Randy Shaver's (Kare 11 Sports Reporter) PSA for his cancer research fundraiser. We are not sure when exactly it will air but we do know that it will be on Channel 11 throughout a good part of the year. While Maryah was in the hospital on Wednesday she received a large bouquet of bright pink flowers, ivy and finger puppets (a few Tootsie Rolls too). The flowers came with an autographed photo of Randy Shaver and a thank you for Maryah taking part in his PSA. I thought that was very classy of Mr. Shaver and Maryah certainly enjoyed the "publicity".
It has been a busy week and I am looking forward to getting back to work this week. I will keep you updated as the week goes along.
Hint, hint... Maryah still checks the site everyday for new messages from all her friends out there. Keep em' coming.
Love and Blessings to you all,
Rachel/Mama
P.S. Check out the newest round of pics!
Wednesday, March 3, 2004 10:25 PM CST
Hi everyone! Sorry we have not updated our journal in a few days. Maryah started another round of chemo on Monday. This round is outpatient which means she carries a backpack with "juice" (saline and a BAD drip) so she can be comfortable at home. Last night though she had abdominal pain so I brought her down to Children's Hospital. Rachel spent the night with Maryah and said she slept through the night. After a 24 hour stay that consisted of an abdominal x-ray, CT scan, blood work, and chemo she is back home resting. They did NOT find anything wrong with her but will continue to closely monitor her during daily clinic visits. I hope this finds you well. Take care and many blessings...
Dad/Zachary
Sunday, February 29, 2004 7:03 PM CST
Hello! Happy Leap Day!
Maryah has been feeling very good all weekend! Yesterday she spent some time with Dad and then out to Red Lobster for dinner with family and then home to watch movies. Dorian got to spend the night and hang out with us. We drove Dorian home and had Uncle James' famous pancakes for breakfast. Maryah and I spent a little time at Michael's searching for scrapbooking treasures and found some great things. I think Maryah has quite the wish list going for her birthday just from one trip to Michael's. This afternoon it was off to a wedding for Auntie Gin's mom. Lot's of good fun this weekend. It is nice to have some time where Maryah feels good before her chemo starts.
Tomorrow we start the next round (#4) of chemo at the clinic. This round is outpatient and Maryah spends two hours per morning at the clinic and then home again. These chemo drugs tend to make her feel pretty crummy! No fun.
Dr. Slomianey shared with us on Friday that Maryah will have three more rounds of chemo (including this week) and then on to surgery to remove the affected bone and replace with a rod or bone graft. Maryah requested that she have the surgery before her birthday on May 7th. We are looking tentatively at late April. She will then be going through approximately eight more rounds of chemotherapy before she will move on to maintanence.
Maryah is very nervous about the surgery but she is looking forward to having the tumor removed.
I hope that everyone has had a fantastic weekend and enjoyed our beautiful weather. If you haven't had a chance to see "The Passion" it is well worth seeing!
Love and Blessings,
Rachel/Mama
Sunday, February 29, 2004 7:03 PM CST
Hello! Happy Leap Day!
Maryah has been feeling very good all weekend! Yesterday she spent some time with Dad and then out to Red Lobster for dinner with family and then home to watch movies. Dorian got to spend the night and hang out with us. We drove Dorian home and had Uncle James' famous pancakes for breakfast. Maryah and I spent a little time at Michael's searching for scrapbooking treasures and found some great things. I think Maryah has quite the wish list going for her birthday just from one trip to Michael's. This afternoon it was off to a wedding for Auntie Gin's mom. Lot's of good fun this weekend. It is nice to have some time where Maryah feels good before her chemo starts.
Tomorrow we start the next round (#4) of chemo at the clinic. This round is outpatient and Maryah spends two hours per morning at the clinic and then home again. These chemo drugs tend to make her feel pretty crummy! No fun.
Dr. Slomianey shared with us on Friday that Maryah will have three more rounds of chemo (including this week) and then on to surgery to remove the affected bone and replace with a rod or bone graft. Maryah requested that she have the surgery before her birthday on May 7th. We are looking tentatively at late April. She will then be going through approximately eight more rounds of chemotherapy before she will move on to maintanence.
Maryah is very nervous about the surgery but she is looking forward to having the tumor removed.
I hope that everyone has had a fantastic weekend and enjoyed our beautiful weather. If you haven't had a chance to see "The Passion" it is well worth seeing!
Love and Blessings,
Rachel/Mama
Saturday, February 28, 2004 9:36 AM CST
Hey it's me Maryah
how are all of you?I feel great today I just have to use cruches for my leg.today I get to go to my grandma's house and watch movies and have popcorn and then me and my cousin Dorian are going to my moms house and we will spend the night over there.have a great day and i will talk to you later.
Maryah+Ryah
Friday, February 27, 2004 6:53 AM CST
Good morning
It's me maryah just wanted to tell you how cool my auntie Jo Jo is.yesterday she showed me close to everything there is to no about scrapbooking.I have 4 pages in my scrapbook
well i have to go
buy Maryah,Ryah
Thursday, February 26, 2004 10:21 AM CST
Hey it's me Maryah
HAPPY THURSDAY!!! How are all of you? I am feeling great except for my leg is sore.Yesterday I went to camp Snoopy with my dad and we went shopping and I got a canopy for my bed.We had a blast!!!
Today my mom had to go to work so i am hanging out with my cousin shayna and my auntie Jo Jo.We are going to work on my new scrapbook and do some other cool things.At 2:00 my nuna will come and spend the rest of the day with me and i am pretty sure we will have a blast to!
well i have to go because my cousin Shayna want's me to play with her
have a great day!!!!!!!!Maryah+Ryah
Thursday, February 26, 2004 8:25 AM CST
Hey it's me maryah
HAPPY THURSDAY!!! How are all of you? I am felling great except for my leg. yesterday i slipped on the ice and my leg streached out and i hurt it and then i fell back in the chair and hit it on the arm of the chair so i am back on crutches.
well i have to go and do my GCSF
buy!!!!!!!!!!
Wednesday, February 25, 2004 11:34 AM CST
Good Morning!
We made it to Wednesday with very little effort this week! YEAH!!!!
Today Maryah is resting comfortably with her Dad at HOME!!!!! It is so fantastic when she can get home and be in her comfort zone. I am so proud of her and praise the Lord for his healing powers daily.
I wanted to share today a bit about this fabulous place that I work. Stillwater Good Samaritan Center is a Nursing Home with approximately 112 residents (whom I love and cherish). My kind and caring co-workers have organized a bake sale that is taking place today. When I walked into the break room this morning I was overwhelmed with tears of joy. There before me were two very long tables covered to the hilt with some of the most beautiful baked goods you have ever seen. Some made cakes, bars, cookies, one of our Nurse Managers, Loretta made tons of Lefsa (which I understand to be very time consuming). There are so many things that obviously took the precious time, energy and love of my friends. There are raffles for a Wild Life Print and throw blanket that were donated by Duck's Unlimited. The continued outpouring of generosity and compassion from my work family is so incredible and such a blessing.
I wanted to share just some of the loving efforts that friends and family are making to bless Maryah and help her through this time of her life.
The Lord is moving in our lives and I love to be able to share that with each of you, I pray that He is moving in your lives as well. I hope this entry brings a smile to your faces as it has to mine all day!!!!
Love and Blessings,
Rachel/Mama
Tuesday, February 24, 2004 9:57 PM CST
Hello everyone! Maryah is home after an unscheduled six day stay at the hospital. She went to the clinic for her routine blood count last Thursday but results came back so low that she needed a transfusion. She also endured mouth and throat sores, a very acidic stomach, cramping, fever, a sore ankle, and other aches and pains. She was physically down but her spirits were up. Actually, she did not want to leave because we had such a good time. The nurses were great and really enjoyed their time with Maryah. Mo came down and hung out with her big sis a few times. Mo sings the Annie song which makes Maryah laugh - "The sun comes out tomowwow, betcha dolla that tomowwow the'll be sun...comes out tomowwow...". Girls are sleeping now and I should join them. Good night and many blessings...
Zachary Dad
Sunday, February 22, 2004 5:30 PM CST
Good Evening All,
Maryah is still at Children's and it is expected she will be there for a couple more days. They are working to keep her pain under control and get her body healed and blood counts up.
Today we are seeing signs of her blood counts coming up. Her plateletts were low however and they did give her a platelett transfusion this afternoon. That should help to get things healing a bit more quickly.
Maryah is in better spirits and was up and coloring a card for her Dad today while listening to some music. She has been able to eat a couple of times in the past couple of days and that helps also. It's always good to have a little "gas in the tank" as I have been told.
Zach is still staying with Maryah as I continue to recover from a stomach bug. It's hard to be away but I know that Maryah is in good hands.
We are hoping to delay chemo at minimum until next Monday. That should give Maryah plenty of time to recover from this episode and get going again.
Life is so unpredictable at times and I have always liked structure and an agenda. This is certainly a challenge.
I continue to pray for my baby girl and her strength and courage.
Please continue with your messages. We continue to read them daily.
Love and Blessings to all!
Rachel/Mama
Saturday, February 21, 2004 4:22 PM CST
Good Afternoon!
Just a quick update for the day. Maryah seems to be feeling a bit more perked up today. Some of the medications had to be adjusted through the night last night and today and now seem to be helping the way they should. Ultimately this will just take time to heal. Maryah is so strong as I can testify by how well she handles things.
I am a bit sick and staying home to recoup and Elaine and Zach have been helping Maryah at the hospital. Maryah has a terrific nurse named Stephanie who was with her yesterday also. She is on top of everything Maryah is going through and works very diligently to get Maryah feeling better with new medications and calling the Dr every hour to get new med orders. We are glad she is there and helping Maryah through this. Maryah feels very comfortable with her. The Lord continues to send more angels to help through this journey.
Keep the prayers going as I know that He can heal her as quickly as we can ask Him to. Maryah prays diligently to thank the Lord for all he provides and to ask him for His healing powers when she is feeling her worst.
Thank you all for being there as each of you have been. Each person we know does something different to bless Maryah as well as Zach and I on this journey. Many thanks to you and blessings to your families.
Lots of Love,
Rachel/Mama
P.S. Check out the new pics from AZ. We will keep updating but these are quite a bit smaller and should keep this page from taking so long to download.
Saturday, February 21, 2004 4:22 PM CST
Good Afternoon!
Just a quick update for the day. Maryah seems to be feeling a bit more perked up today. Some of the medications had to be adjusted through the night last night and today and now seem to be helping the way they should. Ultimately this will just take time to heal. Maryah is so strong as I can testify by how well she handles things.
I am a bit sick and staying home to recoup and Elaine and Zach have been helping Maryah at the hospital. Maryah has a terrific nurse named Stephanie who was with her yesterday also. She is on top of everything Maryah is going through and works very diligently to get Maryah feeling better with new medications and calling the Dr every hour to get new med orders. We are glad she is there and helping Maryah through this. Maryah feels very comfortable with her. The Lord continues to send more angels to help through this journey.
Keep the prayers going as I know that He can heal her as quickly as we can ask Him to. Maryah prays diligently to thank the Lord for all he provides and to ask him for His healing powers when she is feeling her worst.
Thank you all for being there as each of you have been. Each person we know does something different to bless Maryah as well as Zach and I on this journey. Many thanks to you and blessings to your families.
Lots of Love,
Rachel/Mama
Friday, February 20, 2004 2:51 PM CST
Hi friends and family,
as an update to Rachel's entry yesterday, Maryah will be staying inpatient at Children's Hospital. She is in extreme amounts of pain. This pain is being caused by open sores in her mouth that extend down her esophagus. She is also experiencing gastritis, which agitates the sores; along with shortness of breath and fatigue.
They are treating Maryah with pain control through continuous Morphine.
Most likely Maryah will stay at the hospital through the weekend, with a delay in her Chemo treatment indefinately or until she heals.
They will also perform chest x-rays, abdominal x-rays, and blood cultures to determine the infection.
At this time, Maryah is not up to having visitors; she needs rest and lots of sleep. Remember she loves to get "real" mail...so blow the dust off that stationary you been waiting to use and pop a hello in the mail! She also continues to read her site when she's well.
Please direct your prayers toward healing and pain relief, this has been a terrible couple days for Maryah...and there seems to be a few more ahead. Let's ask God if He could shorten this stent of pain quickly!!!
Rachel and Zach extend their thanks to each of you, for your thoughts and prayers. If you have any further questions, I would be glad to take them, as Rachel and Zach will be devoting 100% of their time to the girls.
God Bless all!
Auntie JoJo
Joanne (763) 753-4274
jmartinson@allvantage.com
Thursday, February 19, 2004 7:54 PM CST
Hello again!
Maryah and I arrived back in the Twin Cities last night around 12:30 a.m. we are glad to be back but miss the warm weather and sunshine already.
Maryah started to feel pretty yucky last night on the way home and that led into feeling pretty yucky today also.
Maryah went to her school this morning and along with Sarah (Child Life Specialist, Childrens - St. Paul)she gave a presentation to the third, fourth and fifth grade classes regarding cancer. Maryah's friends and classmates asked some very impressive and insightful questions and Maryah as well as Sarah gave equally impressive and insightful answers. Zach and I are very proud of the work she put into this and how well she handled herself during the question and answer session.
This afternoon Maryah visited the Hem/Onc clinic for an exam and blood counts only to find out her blood counts are extremely low and her hemoglobin just as low. She was then transferred down to the Short Stay unit at Children's for a red blood cell transfusion. Maryah is still there and won't be through with the transfusion and a run of antibiotic until very late tonight. Zach has relieved me so that I can catch up on some one-on-one time with Morgan. Maryah is experiencing some pretty extreme stomach pain and will be getting some new medications to relieve that.
I am so pleased Maryah felt so well for her trip and spent some good time with family before this all kicked in. So glad to be home and around our familiar nurses and doctors for treatment.
Well, that is all I have for now. Thanks for keeping up with the journey and keep leaving those great messages!
God Bless,
Lots of Love,
Rachel/Mama
Thursday, February 19, 2004 7:54 PM CST
Hello again!
Maryah and I arrived back in the Twin Cities last night around 12:30 a.m. we are glad to be back but miss the warm weather and sunshine already.
Maryah started to feel pretty yucky last night on the way home and that led into feeling pretty yucky today also.
Maryah went to her school this morning and along with Sarah (Child Life Specialist, Childrens - St. Paul)she gave a presentation to the third, fourth and fifth grade classes regarding cancer. Maryah's friends and classmates asked some very impressive and insightful questions and Maryah as well as Sarah gave equally impressive and insightful answers. Zach and I are very proud of the work she put into this and how well she handled herself during the question and answer session.
This afternoon Maryah visited the Hem/Onc clinic for an exam and blood counts only to find out her blood counts are extremely low and her hemoglobin just as low. She was then transferred down to the Short Stay unit at Children's for a red blood cell transfusion. Maryah is still there and won't be through with the transfusion and a run of antibiotic until very late tonight. Zach has relieved me so that I can catch up on some one-on-one time with Morgan. Maryah is experiencing some pretty extreme stomach pain and will be getting some new medications to relieve that.
I am so pleased Maryah felt so well for her trip and spent some good time with family before this all kicked in. So glad to be home and around our familiar nurses and doctors for treatment.
Well, that is all I have for now. Thanks for keeping up with the journey and keep leaving those great messages!
God Bless,
Lots of Love,
Rachel/Mama
Tuesday, February 17, 2004 5:52 PM CST
Good Tuesday from sunny Arizona!
We are enjoying our second full day here in the sunshine state. We had a full day today. This morning Great Aunt Gretty (Chief's sister) took us to the Hole in One for breakfast where she and Chief (Maryah's Great Grandfather) ate breakfast each Thursday morning. We then went to Gretty's house in Sun City West for a ride around town in the golf cart. After our adventure in the golf cart we drove to The Boulders and saw some beautiful homes and shopped in a mall called La Pedegral which is very similar to a beautiful little outdoor shopping "mall" we had visited several years ago in Sedona, AZ. We then drove a little further to Carefree, AZ (fitting isn't it?) and then home to Aunt Shari and Uncle Jim's house. We are on our way to Scotsdale for dinner at Red Lobster (Maryah's favorite) where she will have a surprise guest and then we have all day tomorrow to lounge around in the sun. We hope that everyone is well and enjoying the cold MN weather...wish we were there... NOT! Sorry!
Morgan and Daddy are enjoying their time together and we are looking forward to seeing them on Thursday.
Lots of love to all,
Rachel/Mama
Monday, February 16, 2004 8:26 AM CST
Good Morning from sunny Arizona. It is 7:30 a.m. here and 8:30 a.m. back in good ol' MN. It is only about 45 degrees right now but we are expecting 74 degrees by early afternoon and 80 by tomorrow. The rain and cooler 60 degrees will wait for us to leave and come in on Thursday. We will be back to our cold MN weather by then. We got in at 8 p.m. last night to an awaiting Uncle Jim and Aunt Shari. We are having a blast! We sat outside last night for a bit before heading to bed. Today we have a day filled with sunshine and shopping with Grandmere. Tuesday we will see Great Aunt Gretty Tift for a bit.
Maryah is feeling very well and was a trooper even during our 30 minute search at the airport yesterday. We were one of those "random" searches but I believe Zach set me up! Ask him to tell you the strory :)
Well... off to our fresh picked oranges and "Grandma Toast". Enjoy your day and we will update the pictures later today.
Love to all,
Rachel/Mama
Friday, February 13, 2004 9:34 AM CST
Good Morning!
Just thought I would get a quick update out before the weekend. This weekend looks to be a busy one so I might not get time to update until next week!
Some exciting news....Maryah and I are going to hop a plane to Arizona Sunday night. We will be visiting Aunt Sherri, Uncle Jim and Grandmere in the sunny, warm weather of Glendale and Sun City. We are praying for Maryah to feel well for her trip so we can possibly do a bit of hiking in the mountains and a little shopping in between sunbathing and laying by the pool! Sorry to rub it in but the R&R is much needed!
The other excitement Maryah and I had yesterday was at the hospital when Maryah met MN Wild players Wes Walz and Matt Johnson. They were there to hang out with the kids, take pictures and sign autographs. It was such a fun and exciting time and Maryah really warmed up after we spent a little time. She even decorated a Wild colored Valentine cookie for Wes Walz. He said it was "the best cookie he ever tasted".
Today I am overwhelmed with the blessings that continue to come. Each day that I come into the Nursing Home my friends here have done something wonderful to make my day. Today there was a beautiful bouquet of Valentine's flowers and a sign up sheet for a "bake sale" that the employees have filled in order to raise funds to contribute to Maryah's medical costs! Talk about wonderful people who give so selflessly.
I am not sure that Zach and I can even express in words the appreciation and thanks for all of the generosity in prayers and kindnesses. Bless each of you! We love you dearly.
Have a wonderful weekend and we will update again soon. As soon as we have our pictures from AZ we will get them on the site.
Rachel/Mama
Thursday, February 12, 2004 9:05 AM CST
Good Morning! Thank goodness for Thursdays. Maryah and I just woke up a short time ago and are enjoying the sunshine beaming in through the hospital window. It was such a blessing to wake up to sunshine. Cabin fever starts to set in on those dreary days. We are starting our day with a journal and some worship music and prayer. We will do some crafts and scrapbooking and keep working on Maryah's Valentine's cards. We are now on chapter 10 of "Tale of Despereaux" and we are really enjoying the story that is unfolding.
Maryah is quite the photographer we have determined. Sarah from the Hem/Onc clinic brought Maryah this wonderful digital camera so she could capture her hospital experience. Maryah just snapped an incredible picture from her hospital window of the cathedral...amazing that she is still focused on the beauty of the things around her. We got a great shot of the "beds-eye" view of her orange chemo medicine (Doxirubicin) under the brown bag of secrecy!
Maryah will receive chemo until later tongiht and discharged tomorrow morning. We are looking forward to being home and celebrating Valentine's Day together. Maryah and Morgan are my heart dancing around outside my body! What a love to celebrate. Blessed day!
Rachel/Mama
Thursday, February 12, 2004 9:05 AM CST
Good Morning! Thank goodness for Thursdays. Maryah and I just woke up a short time ago and are enjoying the sunshine beaming in through the hospital window. It was such a blessing to wake up to sunshine. Cabin fever starts to set in on those dreary days. We are starting our day with a journal and some worship music and prayer. We will do some crafts and scrapbooking and keep working on Maryah's Valentine's cards. We are now on chapter 10 of "Tale of Despereaux" and we are really enjoying the story that is unfolding.
Maryah is quite the photographer we have determined. Sarah from the Hem/Onc clinic brought Maryah this wonderful digital camera so she could capture her hospital experience. Maryah just snapped an incredible picture from her hospital window of the cathedral...amazing that she is still focused on the beauty of the things around her. We got a great shot of the "beds-eye" view of her orange chemo medicine (Doxirubicin) under the brown bag of secrecy!
Maryah will receive chemo until later tongiht and discharged tomorrow morning. We are looking forward to being home and celebrating Valentine's Day together. Maryah and Morgan are my heart dancing around outside my body! What a love to celebrate. Blessed day!
Rachel/Mama
Monday, February 9, 2004 8:41 PM CST
Good Evening and Happy Monday!
What a wonderful start to a what must be a wonderful week. One can hope :)
Today I got a full day of work in and LOTS done in the office. That makes me feel much better. Zach and Ry came to visit me at the nursing home so all the people at work that have wanted to see her were able to give her well wishes face-to-face. The comments after Maryah left were that she is definately her Dad's girl and no denying it with their shaved heads!
Maryah was feeling better and was able to run errands with Dad and help him get some things done around his house.
Tonight Papa and Gramma Tift, Hannah, Aunt Jannie and Uncle Jim came over with yummy supper and for a nice visit. It sure made for a nice evening of family and fun! Aunt Jannie brought Maryah an excellent book "The Tale of Despereaux" and they started to read what seems to be a great story. We will continue to read it in the hospital. I am sure that Aunt Jannie will come back over to read some more with Ry.
Tomorrow Maryah starts Round #3 of chemo at Children's and will be inpatient through Thursday afternoon. We will do lots of reading and I am sure Maryah will get lots of much needed rest. We have lots of scrapbooking to do with all the treasures Auntie Jo supplied. We will work on making Valentine's cards and getting them in the mail in plenty of time. Lots to do!!!!!
Maryah enjoyed some time with her Dad last night and when I called to say "Goodnight" he was making steak for Mo and Ry at 9:00p.m. I think Maryah was in her glory!
Well... we are off to bed for what promises to be an early and very busy morning.
Hope all is well with you and your families. We really love to read your messages every day!
God Bless!
Rachel/Mama
Saturday, February 7, 2004 4:05 PM CST
Hey it's me Maryah
I hope all of you are having a GREAT day!!! today I am felling much better.I'm really glad I am out of the hospital well I have to go god bless all of you have a great day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Saturday, February 7, 2004 10:24 AM CST
Good Morning All!
This morning Maryah is feeling about the same. She has still been experiencing an upset stomach, some cramping and a slight fever. She seems to always be able to find her smile. She is such a strong spirited little one and I am more proud of her daily. I know that Maryah will probably journal today to get word out from her own mouth. I can't really do justice to how exactly she is feeling since my body is not experiencing the changes, the aches, the pains and the ups and downs. Hopefully you'll hear from her today and if you aren't able to get the impression of how strong spirited she is through our words you will certainly hear it from her. She is an inspiration to all of us. On days when we feel as though the road is so long she reminds us of why we will continue to challenge this and fight this disease. When Maryah asked me in the beginning "Why did God give me cancer?" He gave me the response very quickly. "The Lord did not give you cancer Maryah but He knew that you are one of His strong children and that you would amaze people through this journey. Someone, somehow will learn from your disease and good things will come of it". I know those words were a gift and we live by them daily and continue to ask the Lord to take her fears and pain so she is comfortable and happy. He continues to do this for her. Praise the Lord! I am ever so thankful today as I am everyday for His presence in our lives.
M&M are with Dad this weekend and I am fighting the beginning of a cold with some R&R. Nothing better than cuddling up in a warm blanket and reading a book or watching HGTV :). Thanks Zach!
Well all... enjoy your day and check in later for word from Miss M. We love you and are thankful for each of you! Bless you and your families.
Rachel/Mama
Friday, February 6, 2004 11:05 AM CST
GREAT NEWS - Maryah's counts skyrocketed upward and she can go home tonight! I was just packing to go to the hosital tonight, but she surprised us again. Rachel spent last night with Ryah and just explained to me that her total blood count number known as the ANC went from 27 yesterday to 200 today. When the ANC goes below 200 she's suseptable to illness so the doc's have her go in for monitoring. Yes, she's at 200, however, the monocyte count now indicates her total count will rise to around 1,000. Thanks to Nuna (Elaine) Maryah and Mo have a new day bed/trundle bed for our place. I spent a few hours yesterday getting their room ready and I'm excited to have them both here. Its too quiet without M&M. I'll have Maryah write a journal entry tomorrow so you can hear from her. Take care and many blessings...
Dad
Hello friends and family!
I am going to try to get a couple words in, as I have the two magoos(Shayna and Morgan) running through here like terrors! I have a real respect for those Godesses (mothers!) that handle several toddlers at a time. I am not worthy!!
Maryah was admitted to the hospital yesterday afternoon. After having most of her "off" week feeling nausea and discomfort, Rachel brought her down to see what was going on. They found Maryah's blood counts to be extremely low, as well as having a slight fever and abdominal pain. They have set her up with antibiotics, and are keeping track of the blood levels. As you all know, Maryah cannot be exposed to infection...especially when her blood count is very vulnerable.
She will be staying at Children's until Sunday and if her counts are back up, she will stay for her next round of Chemo. Some fun week off, huh?!!
Although Maryah has been dealt a bad week, she remains ever so beautiful and full of life. That gorgeous smile manages to peak out on occation, with a little joke or tickle.
I would again like to thank each of you who continue prayers, and keeping Maryah and her family in your hearts! They still have a long road ahead, and all of you help make that journey to be less lonely. Every prayer, message, phone call, letter, or visit makes the daily task all that much lighter.
Thank you all, and God bless!
Auntie JoJo
Wednesday, February 4, 2004 2:10 PM CST
Hello,
I'm sneaking in a quick journal, before Rachel or Zach update. The new pics are in...waiting to get a couple more of Maryah in her beautiful new buzz.
My captions for the first two pictures didn't come out complete...1) Kaitlyn, Maryah, Dorian, Shayna
Morgan, Aerielle
2)Mama, Maryah, Auntie Drey
I saw Maryah last evening, and although she didn,t feel so great...she still gave me a few smiles. Beyond a doubt, she is one beautiful inspiration!!!!
I wish Morgan could transfer just a tish of that energy she has...boy!!She keeps Rachel flying!
Thanks to each and every one of you who continue to pop into Maryah's site (she adores all the messages), and also, for the prayers that are flowing in...keep them coming!
Love to all and God Bless!!
Auntie JoJo
Tuesday, February 3, 2004 9:04 AM CST
Good Morning!
Compliments of Auntie Jo Jo check out the new pics. You can finally get a glimpse of Maryah's short hairdo before the big shave! Enjoy. There will be more to come soon.
Rachel/Mama
Tuesday, February 3, 2004 9:04 AM CST
Good Morning!
Compliments of Auntie Jo Jo check out the new pics. You can finally get a glimpse of Maryah's short hairdo before the big shave! Enjoy. There will be more to come soon.
Rachel/Mama
Monday, February 2, 2004 7:37 PM CST
Hello to all!
We are having an unusually quiet evening at home. Maryah is scrapbooking and poor Morgan is sick with an upper respitory virus. We are trying to keep the two from slobbering all over eachother...hahaha!
Today was the start of a new week, an "off" week for Maryah as far as chemo goes and we have started it off with all of this beautiful snow. Well... I guess for those of us who live here choose this lifestyle. Thirteen layers of clothing, wet feet, cold noses, two hours of shoveling and cleaning the snow off of our cars and the occasional romp through the powdery stuff when we are brave enough to find our way out. The snow is deep enough we could very well lose Morgan in a snow drift. The snow didn't slow our day any (except for the traffic). Maryah went to the clinic with Nuna for blood counts this morning, Morgan went off to Angie's, Dad spent the morning shoveling at the apartment and the afternoon with the girls and I went in to work for my first full day in a long while. It feels good to get things as close to normal as we can.
Maryah will start working with the homebound teachers this week to get caught up with school. If all goes well with blood counts for the week Maryah will be on schedule for round three of chemo on Monday. We'll keep you posted.
The peace continues and holds us all in high spirits. Thank you again for holding our family up in prayer daily. The Lord continues to bless us and keep us close each day. The prayers are being answered. Thank you!
Well... since the Wild are playing it must be time to go and enjoy the game. Thanks for checking in and we'll keep updating you through the week. Keep sending the great messages, Miss M checks each day and hopes to hear from all of you.
Take care and God Bless,
Rachel/Mama
Saturday, January 31, 2004 8:34 AM CST
Good Morning and Happy Saturday!
It is truly a happy Saturday at the Tift house. Maryah is feeling much better and I think all the sleep she has gotten has helped her considerably. She feels much better and is so very happy that the nurse will be coming soon to de-access her port. She is done lugging around her backback full of saline, pumps and medicine to help with nausea. The nurse should be here anytime and Maryah is raring to get out and about. Maryah will be going to a birthday party on Sunday at her friend Bobbi's house and she is already making plans for her off week. Hopefully her energy will keep up with her.
Maryah is such a shining star. She is so bright both her mind and spirit and I can't begin to tell you how much she lights up my life. I'm confident that Dad feels the same way.
We really enjoy hearing from everyone, thank you for all the loving messages and especially the continuous prayer.
After talking to Dr. Slo Bananas yesterday we have determined that Maryah will receive four rounds of each chemo regimin (there are two regimins)we will look into surgery. Maryah will not be able to put any wieght on that leg for several months after surgery. She will continue chemo after the surgery. We are very happy with Dr. Slomiani he is very optimistic and keeps us well informed with realistic expectations.
I will continue to update you through the week as we visit the clinic.
Have a great weekend and enjoy the Super Bowl!!!!
Thursday, January 29, 2004 12:45 AM CST
Hi again all! Today was our first day out of the hospital. Maryah was inpatient at Children's until last night. We arrived home about 7:30 p.m. and Maryah went fast asleep until early this morning. She is very tired and in need of lots of rest right now. Maryah went to the Oncology clinic for her chemo this morning as she will do again tomorrow. Tomorrow is the last dose for this round. Next week we have "off" and the week after will be the third round of chemo which will be done inpatient for the entire three days. Now that we are home Maryah has to have her port accessed and saline as well as anti-nausea medications running IV at all times. Well... I never thought I could be a nurse but I just may re-think career options at this point (hahaha)!
Things seem a bit long right now and a bit tedious because Maryah really feels cruddy this time around.We have to keep in mind that some days will be better than others. Spirits remain up and we are getting by little by little. Maryah will start a homebound education program on Monday so she is able to keep up with her fourth grade cirriculum. Lots to learn in the fourth grade. Maryah thinks she may want to be a Pediatric Oncologist to help other kids with cancer. I thought that would be a GREAT idea.
I am working on those pictures as we speak but I thought keeping you all in suspense might just be a little more fun.
Keep checking they'll be here soon.
All our love to each of you!
Rachel/Mama
Tuesday, January 27, 2004 7:29 PM CST
Good Evening All!
Wanted to give you the latest update on Ry's condition. We started the second round of chemo therapy last night at around 9:30 p.m. The day was spent hydrating Maryah enough to begin the chemo drug infusion. Maryah is doing well with the new chemo drugs. Of course she is suffering from the nausea and mild dizziness which is pretty common. The Oncology team has decided it best to keep Maryah inpatient just a bit longer than originally anticipated. As of tonight they think she may be discharged late tomorrow afternoon. I don't hold my breath any longer because the plan could change by tomorrow morning. Today while going on a walk around the hospital Maryah began experiencing some sharp pain in her leg (near the tumor site) which called for an x-ray to be done. We have not gotten those x-ray results back at this point. I am still waiting on a call from Zach once he gets word from the Doc. Tonight Maryah is resting comfortably at the hospital with Dad and Morgan and I are writing this journal for you. Morgan misses her big sis pretty badly and can't wait to see Ryah with no hair. She truly is the most beautiful bald girl I have ever seen and I don't say that just because I am her Mother.
I am still working on getting new pics out there so all can see the progression of long red hair to short red hair to, well...no hair at all. It really is great. We have some great photos of Maryah with a mohawk before the final shave was complete. I always told my mother-in-law, Elaine that when Maryah pulled the crazy hair thing I would send her to her doorstep but honestly it suits her personality so very well. Under the circumstances she deserves to be a little on the "wild side".
I will write again with more news of the x-ray results as soon as possible. We look forward to reading new messages in the hospital so keep writing when you have a minute.
All of our love,
Rachel/Mama and Morgan/Little Sister
Tuesday, January 27, 2004 7:29 PM CST
Good Evening All!
Wanted to give you the latest update on Ry's condition. We started the second round of chemo therapy last night at around 9:30 p.m. The day was spent hydrating Maryah enough to begin the chemo drug infusion. Maryah is doing well with the new chemo drugs. Of course she is suffering from the nausea and mild dizziness which is pretty common. The Oncology team has decided it best to keep Maryah inpatient just a bit longer than originally anticipated. As of tonight they think she may be discharged late tomorrow afternoon. I don't hold my breath any longer because the plan could change by tomorrow morning. Today while going on a walk around the hospital Maryah began experiencing some sharp pain in her leg (near the tumor site) which called for an x-ray to be done. We have not gotten those x-ray results back at this point. I am still waiting on a call from Zach once he gets word from the Doc. Tonight Maryah is resting comfortably at the hospital with Dad and Morgan and I are writing this journal for you. Morgan misses her big sis pretty badly and can't wait to see Ryah with no hair. She truly is the most beautiful bald girl I have ever seen and I don't say that just because I am her Mother.
I am still working on getting new pics out there so all can see the progression of long red hair to short red hair to, well...no hair at all. It really is great. We have some great photos of Maryah with a mohawk before the final shave was complete. I always told my mother-in-law, Elaine that when Maryah pulled the crazy hair thing I would send her to her doorstep but honestly it suits her personality so very well. Under the circumstances she deserves to be a little on the "wild side".
I will write again with more news of the x-ray results as soon as possible. We look forward to reading new messages in the hospital so keep writing when you have a minute.
All of our love,
Rachel/Mama and Morgan/Little Sister
Sunday, January 25, 2004 4:26 PM CST
Good Afternoon All!
Today is a lovely Sunday afternoon. Maryah is out enjoying an early supper with her Grandma and will be home shortly. Morgan is playing with her Dad today and Mama...well I got a wonderful nap in. Sounds just about like a "normal" day. Boy, the things we take for granted.
Maryah had her blood draw this morning and the home care nurse called us this afternoon letting us know that her blood counts have dramatically increased and things are a "go" for chemo treatment tomorrow. Maryah will be admitted to Children's St. Paul for her first day with the second regimen of chemo drugs. Tuesday she will come home and return to the clinic for each additional day of chemo through Friday. She will be sent home with and IV Saline solution which she can carry around in a cool back pack so she can still be mobile.
Yesterday was a big day, Maryah started to lose her hair. She was very frightened at first and shed some tears for the loss and the change. Today we spent our regular Sunday morning in bed together and joked about the funny things about being bald. She said to me very confidently this morning that she was not going to wait for this process to complete and "walk around with bald spots everywhere" she stated "I want to shave my head and get this done with once and for all". Indeed she is not letting cancer kick her butt she is in fact kicking it's hind end! YEAH Maryah!
We will be shaving her head this week. Pictures of the new haircut are on the way and we will include the pictures of the ceremonial shaving as well. The most important thing that Maryah is reminding us of (as if we need the reminder) is that it doesn't matter how she looks on the outside because of her beauty from within. How true and a lesson we can all learn from.
This week after reading a short sweet book called "No More Bad Hair Days" we have borrowed a quote from the book and made it our motto:
CANCER IS NOT FOR SISSIES!
You got that right! There are many sweet and funny quotes from this book that have helped us keep our humor during this ordeal. As Maryah's dearest Great Auntie Annie mentioned recently, Maryah comes from really strong stock. The Emerson, Allen and Tift's have provided her with the strength she will need to win this battle and now she continues to provide us with strength.
Maryah is doing so GREAT! She is an inspiration. She truly feels good and when she doesn't feel good she still keeps a smile. She knows what is to come and faces it with her chin up and a good, positive attitude. Maryah understands that chemo is wonderful because it will cure her but that it is awful because of how she feels. It is a love hate relationship that she is already so very familiar with. She is well and I truly mean that...she is well.
Take care and God's blessings to each of you.
Mama/Rachel
Friday, January 23, 2004 8:11 PM CST
Good Evening!
Tonight we are having a rare quiet night at home enjoying some R&R. Maryah and Morgan are playing and singing and I thought I would take a few moments to answer some questions that I have been getting.
Now that we are aware of Maryah's final diagnosis the current plan of action that Dr. Slow Bananas has shared to be our "best option" at this point is to treat Maryah with chemotherapy. There will be approximately three months of chemo initially at which point they will perform another MRI to determine if the tumor in Maryah's right femur is operable. If indeed it is operable Dr. Robi Thomas (U of M) will perform surgery to remove the tumor as well as the affected portion of Maryah's femur. They will reconstruct the femur with either graft or prosthesis. After some recovery time Maryah will then receive approximately three more months of chemotherapy to make certain all cancer cells are eliminated. This puts us at approximately eight months to one year of treatment.
Once we determined that Maryah's cancer did not spread her prognosis became much more positive.
After speaking to Dr. Slo about several options chemo therapy truly does seem to be our best chance to cure Maryah. Radiation (as I have been told) brings a higher risk for Maryah to relapse.
We are very pleased with all of the education we have received regarding Maryah's condition and I will be more diligent about adding the information we learn with all of you.
I realize how many of you really depend on this site to retrieve information and I thank you for taking the time to read and send messages.
We have determined that the recent bone pain Maryah has been experiencing in her legs is being caused by a "build up" of white blood cells in her bone marrow being created by her injections of G-CSF. She will be treated with Vioxx to help with that pain.
Our next step is a blood count (to be drawn by homecare) on Sunday which will determine if her blood counts are high enough for her to begin her next round of chemo. If we get the "ok" she will be admitted to Children's for one night of inpatient chemo and the following four days of chemo will be outpatient at the Oncology Clinic at Children's Hospital.
I have been foolish enough to think that we can just plan day to day but it seems to be that life is just hour by hour for the family.
I continue to feel the Lord's presence and grace daily and I am ever so grateful to have family and friends who extend their support and care daily.
May the Lord Bless you and keep you.
Rachel/Mama
Wednesday, January 21, 2004 6:04 PM CST
Hey, it's me Maryah! I hope you all had a great day. I miss you all a lot. Thank you so much for keeping me in your prayers, it means so much to me and my family. I love all of you so much!!!!!! Today I went to school and I stayed all day. I had a lot of fun we watched the movie Stone Fox. It was really fun. Well I have to go because I am going out to dinner. I love you all and have a great night bye.
Tuesday, January 20, 2004 11:19 AM CST
Good Morning All!
Today is a bright and beautiful sunny day. Maryah is at home today feeling a little "under the weather". Her blood counts have gone down significantly leaving her feel weak and a bit sick to her stomach. She so wanted to go to school today but is just not up to it. Day by day we go...
Maryah will have another blood count done on Friday which will determine if the injections (G-CSF) are helping to bring her blood counts back up or not. If they are not up to the point they need to be her next round of chemotherapy (scheduled to begin on Monday) will have to be postponed until the numbers are where they should be.
This next round of chemo will put Maryah back at Children's over just one night and then she will return to the Clinic each day for four days (about 4-5 hour visits) to receive the remaining medications. During this time she will have IV fluids hooked up through her port that she will be able to carry around with her in a back pack. We are learning so much each day and even Maryah can now tell you that when accessing her port you MUST use a 1" needle not the 1/2" needle or it "won't work". We have absorbed a lot of information and new medical terms and it is as if we have all learned a new and foriegn language. Quite interesting.
Tonight Maryah will go for another visit to Auntie Drey's salon for a "major" hair cut. She is cutting her hair very short ("like Andrea's, our friend from the Children's Hospital pharmacy). I will be taking pictures and will get them on the sight ASAP so all can enjoy the beautiful changes.
Maryah is ever strong and continues to shine through even the worst of this. She continues to mimic Dr. Slomiani and he is even challenging her with different hand and foot movements to make her "game" with him more fun. What a fantastic Doctor. He makes us all laugh.
Well, that is all the information I have for today but we will update you again soon. Please keep the messages coming as Maryah really enjoys reading them daily.
All our love,
Rachel/Mama
Monday, January 19, 2004 1:47 PM CST
Hi friends and family,
Maryah had a terrific evening and morning. She spent the night with Uncle James, Dorian, Shayna, and I. Morgan went overnight with her Grandma. Rachel and Zach had the night off...some R and R was overdue.
Maryah enjoyed making cards...she wants to let so many of you know, she loves you!
As we go through this day by day journey, I have to step back and wonder why these struggles are thrown into our lives. I believe we become extremely comfortable in our routines. Given hardships,as this one, we are instantly aware of how fragile each life is and how much love is in our hearts...ready to give in large quantity. We are more alive than ever when life and mortality is right in front of our faces. We can be more determined than ever to put up the "fight" for ourselves or those we love! I have become stronger, just being around Maryah and my sister.
My hope, in getting to the end of this "battle" is to take each day as a challenge. What can I do today that may help someone or show love.
Thanks to each of you, for the caring that has brought a strenghth to this family...keep the love flowing throughout your own families...it is ever healing!!!!
Joanne / Auntie JoJo
Sunday, January 18, 2004 3:55 PM CST
Good Afternoon all!
Today is Sunday and Maryah has had a very pleasant weekend with lots of FUN things to do while she is feeling good. Yesterday Uncle Greg came to town with cousins Kaitlyn and Arielle. We all went to see the movie "Cheaper By The Dozen". What a cute movie. We ate Subway sandwiches for supper and the girls played until 10 p.m. last night, laughing and enjoying eachother's company. Today we are at Auntie Jo Jo's house to celebrate cousin Shayna's birthday and Maryah is still feeling good with the thought that she "might" want to spend the night at her cousin's house tonight since there is no school for anyone tomorrow. In honor of Dr. King's birthday Zach has, for many years taken our daughters to celebrate the birthday of the man who brought us closer to a place where our children our looked at for the "content of their character and not for the color of their skin". Praise Him!!! Tomorrow will be no different even with a trip to the clinic in between events.
Maryah's blood counts will progressivly drop this next week because as Kathy (Maryah's nurse) explained the bone marrow or "the factory" where new blood cells are produced shuts down after chemo therapy and no new cells are created. Maryah receives an injection that helps produce white blood cell counts daily. I do believe that with that injection as well as a regimin of anti-nausea medications Maryah has continued to feel "good" since her hospital release.
We have two clinic trips this week to determine blood counts and to do some follow up after chemo.
Once again, I know I have said this a lot but I can't seem to say it enough. Thank you for EVERYTHING that each of you are doing to support Maryah, Morgan, Zach and I. We love each of you very much.
Take care and God Bless.
Rachel/Mama
Sunday, January 18, 2004 3:55 PM CST
Good Afternoon all!
Today is Sunday and Maryah has had a very pleasant weekend with lots of FUN things to do while she is feeling good. Yesterday Uncle Greg came to town with cousins Kaitlyn and Arielle. We all went to see the movie "Cheaper By The Dozen". What a cute movie. We ate Subway sandwiches for supper and the girls played until 10 p.m. last night, laughing and enjoying eachother's company. Today we are at Auntie Jo Jo's house to celebrate cousin Shayna's birthday and Maryah is still feeling good with the thought that she "might" want to spend the night at her cousin's house tonight since there is no school for anyone tomorrow. In honor of Dr. King's birthday Zach has, for many years taken our daughters to celebrate the birthday of the man who brought us closer to a place where our children our looked at for the "content of their character and not for the color of their skin". Praise Him!!! Tomorrow will be no different even with a trip to the clinic in between events.
Maryah's blood counts will progressivly drop this next week because as Kathy (Maryah's nurse) explained the bone marrow or "the factory" where new blood cells are produced shuts down after chemo therapy and no new cells are created. Maryah receives an injection that helps produce white blood cell counts daily. I do believe that with that injection as well as a regimin of anti-nausea medications Maryah has continued to feel "good" since her hospital release.
We have two clinic trips this week to determine blood counts and to do some follow up after chemo.
Once again, I know I have said this a lot but I can't seem to say it enough. Thank you for EVERYTHING that each of you are doing to support Maryah, Morgan, Zach and I. We love each of you very much.
Take care and God Bless.
Rachel/Mama
Friday, January 16, 2004 11:18 AM CST
MARYAH WENT TO SCHOOL TODAY!
She is spending a half-day. Rachel and I walked her in at 8:30 and thought for sure she would call us by 10:00 saying she wanted to go home. But she proved us wrong! Maryah has a determination that only she knows...but we see. One week ago today doctors placed the Port in her chest and drew marrow from her hip (in two places). She also had bone pain and the pain of the incision from the biopsy. At that point she/we did not know if it had spread. But Friday morning, before the procedure - with the psychological factor of not-knowing banging on the door - she quietly told me, "Dad, I'm NOT scared because I believe in God". And with that she walks on...
Talk with you tomorrow,
Dad
Thursday, January 15, 2004 8:46 AM CST
Good Morning All!
We are at the hospital and waiting for the doctor to come and give us the a-ok on getting up and out of here. No fever this morning and other than an upset/nauseated stomach Maryah is ready to get the heck out of here! I can't imagine why...can you? This morning at 1:30 I was watching out the hospital window watching the Life Link helicopter land outside and take off again. I can't help but to be reminded of all those in this world that are suffering or that need prayer and I layed quietly and asked that the Lord remember them and that He speed the helicopter to it's destination as Zach and I have done every time we have seen it land and take off. I recognize that the abundant blessings our family has received recently are walking us through this journey with some ease and confidence. I am ever so thankful for that and pray for all of those whose blessings are not so apparent. The messages you leave are a constant reminder of how much you all care and circle around us, almost guarding us from the fear and sadness that can sometimes creep in. THANK YOU!!!! I can't express my immense appreciation in words.
Dr. Messenger is going to be on his way soon and he will direct us on care for Maryah at home between her chemo treatments. His words yesterday were encouraging, he said that Maryah should enjoy life as much as possible by going to movies, plays, birthday parties, SCHOOL :), see her girlfriends and be herself...how WONDERFUL it was to hear that.
Yesterday night I learned how to give a subcutaneous injection (got that word Zach?) that Maryah will need daily and the nurse was kind enough to drop her pants and let me practice on her leg...now that is true work ethic!!! The nurses here at Children's are truly angels and reflect the grace of God daily. They have made a tedious hospital stay a little more happy.
Well... Dr. Messenger was just here and admitted (not so willingly) to share that he is afraid of needles and gets Emla Cream (a numbing cream) before his flu shot. He wants Maryah out of here NOW! As he said "Get out of here Lady". He's really quite awesome and for those of you who know the Lion King movie he sounds just like the monkey Rafiki. The nurse brought that to our attention and lovingly teased him about his nickname. They seem to work well together. What fun and loving people.
We are outta here. We'll update you again soon! Love to you all! Take care and God Bless!
Rachel/Mama
Wednesday, January 14, 2004 4:30 PM CST
Hi! This is Maryah speaking...everyone listening? :)
I have this neat computer in my room so I can play some games and check all my messages on this website.
My nuna, my Dad and Morgan (my sister) and Mom are all here keeping me company. I got a really cool Care Bear today from all my teachers at St. Columba. It's HUGE! I have lots of things to do to here like movies, crafts, games and other things that are fun. I feel pretty good but I have a yucky stomach. The medicine helps though. I will be leaving the hospital tomorrow if I don't get a fever and maybe I will go to school on Friday. I am going to visit with everyone now. Thanks everyone for all the messages.
Wednesday, January 14, 2004 2:56 PM CST
Today Maryah is resting comfortably in her room. The doctor's were able to find a concoction to ease her nausea. Rachel spent last night with her at the hospital and she said Maryah was only up three times - compared to the eight or so the previous night - so we are thankful she is feeling some relief.
She is walking on her leg without crutches. Moving it just an inch last week was excruciating for her. In fact, last night Maryah got up and out of bed and limped to the rest room while wheeling her I.V. stand by herself...because she wanted to let her mom sleep.
She will probably be going home tomorrow and Dr. Messenger said she could even go to school of Friday if she was up to it. We'll keep you posted. God bless...
Zachary
Tuesday, January 13, 2004 6:46 AM CST
Good morning on Tuesday, January 13, 2004
Is that the right date? It just doesn't seen quite possible that this event for Maryah and family started just one short week ago, one very fast track week that is mostly a blur of Maryah, Rachel and Zachary listening to many people explain in strange medical terms what Ewing's Sarcoma is all about and what the course of action could be. As a diversion yesterday Rachel challenged Zach to who could remember and use the new terminology. I see that Zach by his entry has begun the challenge! What I have also observed about these three is that despite the circumstances their humor shines at times and they are all on the look out for new things to learn along the way. Yesterday while waiting in Radiology for the GFR (filtration rate for kidneys), the fish tank in the waiting room provided a long time for gazing at the beautiful fish, watching their antics, wondering about how they get along, or whether fish even smile etc. There are fish tanks all throughout the hospital and I have to say I look forward to stopping each day to say hello to my favorite lion fish. Such beauty to take our minds off the sometime tediousness of hospital life...waiting,waiting,moving to this spot,to that spot,waiting. Maryah continues to have great mornings full of herself and energy and upbeat sillyness. She is even comfortable enough to mimic her doctor some..Dr. Slo Bananas. He's quite pleasant, has an easy smile, asks questions of and listens to Maryah, is attentive to her hair style and fingernail polish, watches her interactions with mom and dad. While he talks, he uses his hands and Maryah picked up on this, waving her hands and smiling at him until he caught on what she was doing. He laughed with her and gave her a little tweak.
She loves her oncology nurse Kathy who is patient with her, jokes, is forthright about accomplishing necessary tasks. FOr example yesterday, kathy had to insert a long needle into her portacath for the first time and when Maryah saw the length of it she blurted out "On, that's nasty!" Kathy worked qquickly and within a second, the needle was in and Maryah yelled in great relief,"Oh my gosh, I didn't feel that!" She's in good hands.
Mid afternoons and evenings are a bit harder. Keep her in your thoughts for comfort, security and knowing that she is well cared for even when mom or dad can't be right beside her.
Before this computer shuts off automatically on me, one more thing...Call the hospital, she's in room 4202, speak to Mom or Dad before visiting or call them at each of their numbers. They'll let you know if Maryah is up for a visit..You're notes on the website are wonderful! Keep them up. Hugs to you all, Elaine/Nuna
Monday, January 12, 2004 6:16 PM CST
Maryah checked into the hospital at 7:45am for an extended stay for her first round of chemo, went through various procedures including a Glomerular Filtration Rate (GFR) which will provide a baseline for "Dr. Slow-bananas" to compare Maryah's kidney functioning throughout chemo. Maryah also received a radioactive med called Tecnesium and had an echo-gram to measure cardiac functioning. She is in high spirits and resting in her own room at the hospital. She has a pleasant view of the bluffs across the high bridge and the helicopter landing pad is right outside her window so the room was deemed "neat" and "cool". Thank you for your continued prayers. Many blessings to all of you. Until next time...
Zachary
Sunday, January 11, 2004 6:47 PM CST
Hi all!
Here we are on Sunday night, Maryah is resting comfortably and watching "The Wedding Panner". Today has been a nice, slow, and relaxing day. Earlier this afternoon Paster Matt, his wife Wendy(also a cancer survivor), and other good friends...Jeanne, Bug, and Jan visited and prayed for healing for Maryah. Tonight we prepare for her hospital stay and a good night's rest.
Please let me send my appreciation once again to each and every one of you. The continued support and every prayer has diminished my fears away. We are extremely confident that this journey will end on a bright path with the Lord's hands upon our shoulders.
We will update this journal as often as possible this week. With the beginning of the Chemotherapy, we are entering an unknown territory. Time will lessen, Maryah's need for 'round the clock care will begin, and sleep will, more than likely, become a commodity.
We have now included a few pictures of our celebration yesterday...take a peek, they're fun! We'll also add more along the way.
As you have all kept Maryah and our family in your thoughts and hearts...know that we too have you in ours!
Love and God Bless each and every one of you!!!!
Rachel / Mama
Saturday, January 10, 2004 7:03 PM CST
Praise the Lord for He is good and ever merciful!!!!
This is Maryah's Mama writing today to give you the news of the day.
The first thing I will say is that we received FABULOUS news today from Dr. Slomiani or as we so fondly refer to him "Dr. Slow Bananas" or Morgan's version "Dr. Salami". The Doc contacted us today he gave Zachary the news that the cancer has NOT spread to Maryah's bone marrow. The marrow biopsy taken yesterday came back difinitavely to tell us that the cancer is not Metastatic but localized to the tumor in Maryah's femur. PRAISE THE LORD, He is leading the path.
Maryah woke up with a bit of pain but confidence that she will storm the day as she prepared to go out to her Auntie Jo Jo's and Uncle Num's house for the Emerson Christmas celebration.
We arrived at Jo Jo's house and Maryah decided that her aching body would not stop her from climbing up and down a long flight of basement stairs to play fuse ball and ping pong and even dance with her cousins. She has been walking with the very limited use of her crutches today and has indeed stormed the day with a shining smile and abundant laughter. Not your typical cancer patient! Maryah has never been a "typical" girl though.
God made maryah a shining star and as Zachary and I have said for years she saved our lives and she continues to provide us with strength, courage and confidence in her ability to overcome ANYTHING! She is truly amazing and we all have so much to learn from her.
I don't have the eloquence that my wonderful Mother-in-law has with writing but to put it straight and to the point Maryah is the joy of my life the love of her Daddy's life. She brings joy to many and I hope that with the journa entries to come that somehow and someway she touches your heart in the same profound way.
I cannot begin to figure out a way to thank each and every person, family and friends, even those we have never met for the continued support you have provided. Know that in some way you will be blessed in your life for all that you are doing to strengthen our family through this enlightening journey. Someday we will figure out a way to repay all of the kindness and love we feel. Mostly I would like to thank you for allowing us to simply care for Maryah without the worries of the "small" and "large" things that need to be done around us.
In closing I have been reading so many books and so much literature regarding Ewing's Sarcoma and I came across this scripture in the process:
Have not I commanded thee, be strong and of a good courage, be not afraid for the Lord thy God is with thee wherever you go.
Joshua 1:9
God Bless each of you today and everyday, you are all in my thoughts and prayers as well.
Good night.
Rachel/Mama
Friday, January 9, 2004 8:34 PM CST
Friday, January 9, 2004
I’ve completely written this journal entry twice and lost both entries. Here I go one more time!
Maryah started off her day with great confidence and a smile that indicated she was doing much better than yesterday. The red streaks in her lovely tawny brown hair were just the right pizzaz that she needed to begin another long day at the hospital for a bone marrow biopsy and the insertion of the subcutaneous venus port which will make it less painful for her to receive medications including chemotherapy or for having blood draws.
When I got to their house this morning Maryah informed me with a smile that her leg pain was much better ( evidence of better pain medication control) and that she was proud to be more independent with mobility on crutches and not wanting to use the wheelchair very much. She told her parents too that “I believe in God and that God would never let her be hurt.”
Both of today’s procedures were done by 2pm when I left the hospital. Rachel and Zach were hoping to hear a preliminary biopsy report but as I write this I have not heard if they did. The completed cytogenic reports would not be available for probably a week. However, on Monday morning Maryah will be admitted to Saint Paul Children’s hospital to first of all complete a kidney function test then begin chemotherapy. She will be in the hospital from 3 to 7 days depending on how she adjusts to the medication.
While waiting for surgery to be over Rachel and Zach were visited by an experienced comforting social worker who among other things offered a brochure about How Families and Friends can Help. They asked that I include some of the do’s and don’ts and add a few of their own requests. They love all of you who are wanting to support them. Understand that this ordeal is exceedingly draining and requires every ounce of fortitude to keep the focus on Maryah and what needs to be done to heal their daughter. Here’s some of what the brochure suggests:
YOU CAN HELP BY...
1.Spending time with the other child(ren) in the family. (This hasn’t been an issue at this time....many have stepped up to this plate..but remember down the road.)
2.Spending time with the ill child so the family can get a break.(I would say that this doesn’t apply right now but will apply as time goes on.)
3.Respecting the fact that, as parents, decisions about a child are the parent’s responsibility.
4.Listening to a parent and being aware of the many feelings that may be expressed: anger, grief, or hope.
5.Realizing that cancer is not contagious, nor is it anyone’s fault.
PLEASE DON’T...
1.Deny or question the doctor’s diagnosis. It has already been difficult enough for the family to accept it.
2.Tell comparison stories about other children ( or adults) with cancer. They won’t help.
3.Suggest alternative therapy. Again, decisions about the child are the parent’s responsbility.
4. Smother the child with gifts. Remember too , that the other child(ren) appreciate your love and attention.
4. Treat the family /child differently or avoid them becaue you don’t know what to say. Just the fact that you care enough to stay in touch means a lot.
5. Say, “Call if you need anything.” Instead, offer to do something specific that you can enjoy doing .
This last one leads me to add....Please think about your special talent or interest and feel free to use th email address on the title page of Maryah’s website. Some examples: One of Maryah’s aunts is a teacher and offered to tutor her should this be a need. Another person offered to do some storytelling or give her an art lesson. Do you sew well? Or have a handyman background? Or like to research information?For example, I asked a niece to research finding out about how to best get mold taken care of...FYI: Mold isn’t good for children on chemo...can cause respiratory issues. So again, think of something specific that you’d like to do for Maryah or the family, send your offer to the email address. IT will be compiled, filed and pulled out when needed. That would be a grand way of helping us all through this journey...
Two more additional specific requests from Rachel and Zach. Please don’t call before 7:30 am or after 8pm. If people want to visit at home, please call ahead, leave a brief message and wait to hear back from one of the parents. Please NO SURPRISE VISITS. They have observed that Maryah’s anxiety sky rockets with surprise visits so this seems like an easy thing to respect. Anyone who knows Maryah closely knows that she is MISS AGENDA needing to know what and when things will happen. Thank you for understanding and respecting this family request.
Again thank you for your kindnesses. God’s presence is truly with Maryah and surrounding her family. Elaine/Nuna
Friday, January 9, 2004 3:53 PM CST
Thursday, January 8, 2004 7:52 PM CST
Folks, The biopsy came back and the report is that the tumor is Ewing Sarcoma. My message yesterday had an error. With Ewing Sarcoma, a bone marrow biopsy is indicated. It is likely that this will be done soon. Maryah needs your concentrated prayers now. I'll add some more tomorrow. Elaine
Thursday, January 8, 2004 5:57 PM CST
Thursday, January 8,2004
Maryah has had a 'rest day' at home with mom and dad..and a 3 pm appointment to have her hair done by her favorite hairstylist...forgive me if I don't spell her name correctly...Dray..I think is the woman's name...Maryah has bugged her mom about doing something fun with her hair...and she asked about doing some "red streaks"...so, why not! She's getting some color done...Sounded like a fun outing for the gal.
I want to let you know that the results of yesterday's bone scan and CT scan were clear and that no other spots of cancer were detected in her skeletal system , chest/lungs or abdomen. Thank you Lord for this bright news! Rachel and Zach are waiting to hear from Dr. Slomiany about the results of the bone biopsy. Again, that will determine further tests and treatment plan. As it looks to both Dr. Thompson and Dr. Slomiany ( who Maryah and Dad have decided is Dr. Slow- me - down or Dr. Slow Poke)the tumor is a Ewing Sarcoma but the pathology report is necessary.
Tomorrow Maryah is back to the hospital for the insertion of the portacath. Mom went out today and bought roomy, soft, pastel colored tops and pull up sweat bottoms, cute matching sox and slip on tennies. "Ryah" loved them all. Along with the yellow fuzzy slippers her Auntie Jo got her, she's ready for the ball! Oh and yes, her hair will be the talk of the hospital,too, no doubt.
Thank you for all the responses..I'll print them off so that Maryah can read them. So many kindnesses...at some point I hope that Rachel and Zach will be able to add a note now and again..THeir main job right now is to be beside Maryah. MIss Morgan has been at her "second home" with Angie who has been daycare mom to both the girls> Angie is lovely and has kept Morgan with her for two nights. She's teaching Morgan and all the daycare kids a special prayer for Maryah. THe plan is for Morgan to come home tonight...she's missed by all. Angie has been working with Morgan..teaching her that Maryah has a bad owie on her leg and no one can touch it...Mo is quick to recite this mantra..TIme will tell.
Love, Elaine/Nuna
Wednesday, January 7, 2004 12:59 AM CST
Hello family and friends,
First of all MARYAH is the star of the day. She has been such a trooper through this new journey that started just two days ago on Monday January 5th,2004. With what was thought to be growing pains and an ache in her right leg just above the knee a few days ago has now been scanned and viewed to be a type of bone cancer. Her mom and dad have also been incredible. All their lives including "Miss Pistol and Speed in Action" Morgan have turned on a dime and they're all doing what needs to be done.
Tuesday Maryah met with Dr. Roby Thompson at the U of M Oncology in Masonic Memorial Center. A few hours later after a biopsy, family met with the doctor to hear that infact he suspects a Ewing Sarcoma however we won't know for absolute sure until the pathology report is complete which should be today or tomorrow. That pathology report will be reviewed at U of M as well as Children's hospital by several independent pathologists. Additional diagnostic tests and more importantly the treatment is dependent on the kind of bone cancer.
Last night Maryah and Mom and Dad had a heart to heart and all the important facts of her condition have been discussed at great length. She now knows that the pain in her leg is caused by a kind of bone cancer and that the treatment includes chemotherapy which will cause loss of her beatiful hair. She has always been "THE AGENDA GIRL" needing to know exactly what is going to happen,when,how etc, etc. Her parents,doctors and nurses are all direct with her and I see ( as her Nuna and observer) that this has helped her tremendously. She is such a bright shining star who has grasped everything so far. What a journey she has been forced to go on!!
Wednesday,today Maryah met the Pediatric Oncologist Dr. David Slomiany (I think that's how he spells his name) at St.Paul Children's Hospital. Dr. Thompson at U of M will be incharge of any surgery that is likely to come down the road to remove the tumor and do any reconstruction of her femur which is likely the case. Dr. Slomiany will be in charge of directing the chemotherapy at Childrens. Before this is over we'll all be whizzes at navigating both these hospitals,parking lots etc.
As I write Maryah is finishing up a CT Scan that will look at the whole of her body for any additional spots and then finish up today with a Bone Scan also checking for possible metastasis of cancer. For this she had to have an IV put in and I'll say for something that she was extremely upset about, the whole thing went quite well and by the time the IV was put in she was even looking at it.
Tonight she sees her friend Sarah for which she is exceedingly happy and will be at home for rest and food.
Tomorrow is a free day. Friday there are a few more tests and a portacath will be inserted so that each time she needs chemotherapy so she won't have to have another needle prick. She liked that.Saturday she's going to a family HOliday celebration! Hurrah...bring on the presents! Monday she'll be hospitalized and will start chemo remaining in the hospital for most of the week. Then she'll be discharged home and have to go back and forth at intervals for more chemo over the span of four to six months. That's basically all I know right now.
The Children's hospital deals so well with children. Know that she is in a wonderful place. Family and friends have molibized quickly to pour out their prayers and love and with Auntie Joann, Grampa Denny, Gramma Kim and me, some of the basics of life ...grocery shopping, laundry,fixing a plumbing problem, meals have been delegated to the start of a wide circle of support for this family. Many,many from around the world have joined the prayer circle for Maryah. Today we pray that the results of today's test indicate that the tumor is localized.
This website will be updated now and again, whenever Maryah is here. It is meant right now to localize some of the information that is going out. Like I indicated above Rachel and Zach are doing a grand job of being exceptional parents, being tender care givers, learning all the facts and information necessary to care for her and doing what they absolutely need to do to have their daughter healed. Prayer is what you all can continue to do. Pray for the lessening of Maryah's pain and fears. Many have offerred to help in more direct ways. YOu are important to this journey,too and when you least expect it you may get a phone call saying "Can you do this?" I am not shy about asking for help.. You're on my list!!
Take care,
Elaine (Zach's mom and Maryah's Nuna)
Wednesday, January 7, 2004 12:41 AM CST
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