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December 2003
12/04/2003
 Hannah had pain off and on most of Wednesday evening and especially Wednesday night! The bladder spasms and now we think she has a yeast infection!

Wednesday morning her grandpa was going into Staunton to run some errands and I asked him since he was going to town if he would stop by and get Hannah's homework. Well she heard me and jumped up and down and begged me to go with him. I said no about 10 times and when she asked me why not I told her because first of all I didn't want to disrupt the classroom by just popping in and because she has a foley catheter and you can clearly see the urine in the bag. She told me so sweetly that none of her classmates would mind at all that she had the bag and she knew her teachers wouldn't because they were grown ups! How could I say no to that. We pinned the tube up and tried to disguise it but whether anyone seen anything or not wouldn't have mattered one bit to Hannah. She was so excited about just getting to go in her school building. As luck would have it, all her classmates were out of the room in a science project (or something) and she got to visit with her teachers and friends from school. She was on Cloud 9 for hours and hours! Grandpa told me that everyone was just as excited to see her too.

Towards night time the pain was so awful that no matter what I did for her she would just scream and cry. Terry got home about 12:30 that night and got her off the couch and they started watching Animal Planet and it was enough to distract her so she could relax enough for me to put some cream on her. Finally, around 2:00 am she went to bed exhausted.

This morning we went to SLU so they could make a mold of her body. It was pretty neat how they did it. Now every time she comes in for radiation treatment they will just lie her in her molded form and she will get radiated in the same area every time. She was really good through all of that. We had to take her upstairs after all the body markings were made and they ran her through a CT Scan to validate that they would be radiating the right area and they decided to use contrast ... which would have been fine if they had told us this an hour earlier! Hannah knew immediately that in order to use contrast they would have to access her port without any numbing medicine. She was one unhappy little girl. It took 4 of us to hold her down and she was hitting everyone, including me. I was shocked that she would do this to anyone, especially me. We had a long discussion about it this evening and she's made promises of what to try different next time.

After all the radiation business was taken care of we had to go back to Glennon and have blood work done before she could be admitted for Chemo. Finally we got upstairs on 4 North about 4:30 pm. What a long day this has been.

She got started late on Chemo but was given Vincristine (an American Drug) and Ifosamide (a European Drug). He wanted to give her another one of the American big chemo drugs but decided not to because of the bladder infection and complications and radiation next week. So I guess we'll just wait and see how it goes.

Our love to everyone ... Cindi and Hannah
12/09/2003
 We got good news yesterday ... the systogram results were good and the foley catheter finally came out! After four weeks of having this darn thing I'm not sure who's the happiest, me or Hannah!

She tolerated her chemo ok this time. She had alot of tummy aches and some vomiting but that's what Zofran is for.

We are leaving Cardinal Glennon today and going over to SLU for a final consultation before starting radiation treatment tomorrow. The game plan is to come daily to SLU for minutes for 6 weeks.

Last night there wasn't a bed to be found in Glennon or Children's because of the FLU! Dr. Kelly told us this morning that it's too dangerous for Hannah to be exposed to this ... so he broke Hannah's heart when he told her she couldn't go back to school until the outbreak is under control. I guess that means no Christmas shopping either. Guess we'll just have to find other ways to get her in the Christmas spirit! I haven't even begun to start Christmas shopping, baking, wrapping or even get my tree up ... not to mention Christmas cards!

I'll keep you posted as things change ... remember if you don't hear from me it's because no news is good news.

Merry Christmas ... Love Cindi and Hannah
12/10/2003
 Hannah still continues to have alot of tummy pain still today despite all the Methadone and Zofran she's been receivng. We're not sure if it's gas or the chemo she received. Just getting her to eat a tiny bit and drink the bare minimum is a battle. She's loosing so much weight and her little eyes are starting to sink back in her head.

This morning was her first Radiation treatment at SLU. After all the days of preparation I still wasn't ready for this morning. The area they are radiating is so massive and I have this feeling in the pit of stomach that it's just not right. We arrived at the appointment 20 minutes late this morning and every step I walked to the radiation floor felt like I had a bag of concrete on each foot. I took her in and signed her name, hung up her coat, then took it off the rack and put it back on her ... twice. When she was put in the room and placed in her body mold and it was time for me to leave I prayed for strength to be able to walk out of there and let this huge machine do to her what I knew it was going to do. I questioned myself if I was really doing the right thing.

She handled the radiation fine. They tell me it will take a week or two before she starts feeling anything from this treatment ... wouldn't you know that'll be the time she goes back in for another round of chemo.

I'll keep you all posted.

Love Cindi and Hannah
12/11/2003 - Mark Whitman
 I didn't mention anything in my previous message because I have been so upset all day, but finally decided that today wasn't about me or my feelings but about one very, very special little boy and his family.

His name was Mark and Hannah and I called him "Markie". He was 2 years old and has a one year old sister named Katie and an older brother named Blake who is 3 years old. Mark's mom and dad's names are David and Debra.

Mark was diagnosed in January of this year with Neuroblastoma Cancer and at the time of diagnosis he was a stage 4. Hannah was diagnosed in May and Debra and I quickly became good friends. First we met at the Costas Center every week and would chat briefly about how proud we were that our children had a spirit and determination that would see them through this awful battle with their cancer.

In July Hannah became so ill that she had to be hospitalized every time we turned around and seen in the Costas Center for check ups every other day at times. I'll never forget seeing Debra and David in the Costas Center about that time as Markie too was making Dr. Kelly's job much more difficult than it should have been. Eventually Mark was inpatient at Glennon frequently and Debra and I spent many hours at night talking, supporting and caring for one another in ways only another mother who has a baby with cancer can know.

Today Debra and I even joked about how it was always our two that drove Dr. Kelly up the wall at times. When Dr. Kelly attemped to touch Hannah when she was so ill she would scream at the top of her lungs, "Don't touch me"!! If he would do it anyway she would scream, "What don't you understand about not touching me"!! Of course Dr. Kelly would just laugh. Debra said Mark was a little more quiet than Hannah but was much more physical. When Dr. Kelly would come at him Mark would pull the covers up over his head and refused to take them down so anyone could look at him. As soon as Dr. Kelly got the blanket off his head he would jerk it right back and cover himself up and tell him, "NO NO NO"! Another thing Mark would do is run, run, run ... and there were many times we almost didn't get to him in time before he almost got on the elevator!

The spirit and fight Mark had was very similar to Hannah. Loved! Oh how Mark was loved! Everyone who came in contact with him instantly fell in love with him. Naturally we all wanted to hold him and squeeze him! Mark made you earn that right though, and it wasn't easy either!

Cute! Oh my gosh he had this little button nose and huge beautiful eyes ... but what you noticed the most about him was this smile that would light up any room he walked into. Talk about all boy ... yep ... that was little Mark for sure! He loved playing with balls, any kind it didn't matter to him.

He especially loved his family. Of course Debra stayed with him all the time and his older brother Blake was starting to have problems because he wanted and needed Mark and his mommy.

Like Hannah his tumor was initially inoperable and they both went through their surgery's with flying colors. He had a huge tumor in the abdomen and chest area and the radiation was going to be so radical that it couldn't be done at Cardinal Glennon. Like other children with Neuroblastoma he would have to go to New York where the special radiation machines were.

After Dr. Kelly was able to successfully shrink his tumor with Chemotherapy, and the tumor had been removed surgically it was time for Mark to have a Bone Marrow Transplant. This is a very delicate and difficult time. Mark had been in bone marrow for 3 weeks when he became very ill and eventually coded. He was revived and taken to PICU where he had been for a week and 3 days. He was having a reaction to his treatment and mucus was so thick in his throat he could barely breathe. He was intubated and the doctors were waiting for the right time to extubate him. Yesterday they tried to suction him before removing the tube and found they couldn't get the tube down his throat, it was that swollen.

They took him to surgery late yesterday and while on the operating table Mark had a stroke. Because Mark had no platelets (due to the bone marrow transplant) the minor bleed in his brain was impossible to stop. As his brain filled with blood his lungs filled with fluid. The doctors and surgeons told Debra and David they could do surgery and remove the blood from the brain but he would be blind and never regain the quality of life that he had once had.

Debra knowing the type of child Mark was ... independent, strong, and such a brave little fighter would never want a life like the doctors were offering. Together, with both their families, the machines were turned off, and while Debra held him in her arms Markie left this earth and found peace in a much better place.

I got the call today while Hannah and I were at lunch. It was another one of those special moments between the two of us when I turned the cell phone off and Hannah seeing me cry asked me what was wrong. I told her I was crying because I was sad and had bad news about our little Markie. With those two little delicate eyes she asked me what happened and I told her. She looked down at the table for a minute and looked back up at me and very quietly said that it was ok because little Markie was now in a much better place. I continued to cry and she got up and came over to comfort me. She told me it would be ok now. I hugged her and she sat back down and looked out the window and said, "look mommy Markie made it snow today".

I cried all the way to Cardinal Glennon and Hannah appeared to be handling the news just fine. I took her to the Costas Center where she stayed while I went down to see Debra and Mark. As it worked out I was the last one in to see the family. Mark was still in the room and he looked so bad. What a fight this little guy gave them. I walked in and picked up his little hand with those little fingers and kissed him. Debra came over and it was so emotional ... I won't even go into it.

I knew where Mark got his strength. His incredible parents were happy that the pain and suffering was finally over ... they were relieved that there would never be another "owie".

Mark's nurse was coming in so she and Debra could give him his last Sponge Bob bath. As I was leaving I told Debra how amazing it was that at 2 years old he managed to do things "his way". She smiled and hugged me and said that just as Mark passed she looked up at the window and seen it was snowing and said to her husband, "Mark loved the snow and had the final word".

This special family lives in Jerseyville, IL and I know will need everyone of Hannah's prayer list family to keep them in their prayers. Hannah and I would appreciate you extending your thoughts and prayers to this wonderful family.

Thank You.

12/11/2003 - A song for Markie
 I am e-mailing Vic and Tim (the producer) from 101.1 "The River" (two of Hannah's favorite people in the whole world) and asking them to play a special song for me and Hannah and have it dedicated to Mark Whitman and his family. It's called, "Fly" and it's a song by Celine Dion. I heard this song a long time ago and this evening before I put Hannah to bed we talked about Markie again and I asked her if she'd like to hear this song. Of course she did and afterwards she smiled and said it was "perfect" and that I should e-mail The River and ask them to play it for Mark's mommy and daddy.

So what do you think Trish and Vic? What do you think Tim? Is it possible?

Hannah and I are up by 6:30 and in the car until about 8:45 am. If you think it's a good idea please let us know.

For those of you who received a 2004 Celebrating a Year of Miracles Calendar if you turn to April and look at the picture on the actual day part of the calendar you will see a small picture of two little boys and a IV pole. The taller child in red is Blake, Mark's older brother and of course in the blue shirt standing on his IV pole is Markie.

Thank you ... love, Cindi and Hannah.

Here are the words to the song:

Fly

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

12/15/2003
 I've been getting e-mails wondering why I haven't given an update about Hannah in several days. We all took Little Mark's death very hard. It hit us like a freight train and we've all been sad and needing to re cooperate a little bit. The wake was Friday evening and the funeral was Saturday morning. The services were extraordinary and Debra and David handled everything with joy in their hearts instead of sorrow. There were many Glennon families at the services (like mine) that had gotten to know the Whitman's as well as we did. One these families had lost a child, Bailey, only two months ago to Wilm's Cancer, and he was only 13 months old. There was another family there who has a son named Christopher and he has the exact type of cancer as Markie, and is the same age too. There was another family there who's son Roman, has just relapsed after 6 months of being in remission from Rhabdomyosarcoma (the same as Hannah's). I could go on and on. The point in all this is that even though there were terrified parents there (like us) who has just had their first experience with death ... not one of us would have been any place in the whole world either.

After radiation Friday we stopped at a mall before going to the funeral home (it was noon and the place was practically empty) with the intentions of finding something to bring to the family or Markie. Hannah never goes anywhere empty handed. We thought about a Christmas present for Markie's older brother and baby sister ... we thought about a angel pin for Debra ... but nothing seemed to be the right thing! Eventually we stopped at a Chuckie's stand to pick up a personalized picture for Dr. Kelly for Christmas and the man working the stand kept looking at Hannah. After we had paid for our purchase this man asked us to wait a minute and looked and dug and finally came up with this perfect white little beanie baby angel bear, and it had breathtaking wings and a halo on the top. Hannah and I looked at it and both of us knew it was what we had been looking for all day!! Hannah ran up to him to give him a hug and thank him for the bear then I told him our story of the day and how special this angel bear was to us. He cried a little and told us when he looked at Hannah he just knew that she was a special little girl and he knew he only had one of these bears left and kept looking for it to give to Hannah. The smile never left Hannah's face once. Instead of buying a card I suggested we make Markie one. This man gave us hard card stock paper and cut it into a little label and Hannah wrote, "Enjoy Heaven Markie, I will miss you, Love, Hannah". This man and I both cried and had people coming over to ask us what was wrong.

When we got to the funeral home it was late and there wasn't anyone standing in line. I had told Hannah to place the angel bear near some flowers or on the floor next to a stand, etc. When Debra seen Hannah she immediately went up to her and hugged and hugged her. She took Hannah and I up to see Markie in the casket and Hannah rubbed his arm again and again. Debra asked Hannah if she would like to put the angel bear next to Mark's hands and Hannah said yes and together they placed it just behind his little hands. Then Hannah took the note she wrote out of her pocket and put it in the bears hands and after Debra read it she cried. Her sister told me It was the first time Debra had cried. I asked Hannah what she was feeling and she told me "happiness" that Markie doesn't have to go through the pain she does anymore. She also said she was glad that he "looked really good too".

Saturday she decided to stay home and play with Jake so just Terry and I went. Debra had dressed Markie in his favorite orange sweater with white snowflakes on it. Mark said his favorite color was orange because it was his brothers favorite color and he wanted to be just like him. There were lot's of orange balloons around his casket and in other parts of the funeral home. So after a beautiful, beautiful service we drove out to the cemetery and after a prayer Debra passed out all the orange balloons to everyone who was there. When Debra said "Now" we all let them go at once and watched as they all went up towards the sky ... you could have heard a pin drop ... and there were many tears ... and many smiles of happiness too.

Mark's death has changed us in a way that is hard to describe. The spirit and life he brought into this world and on the 4th floor at Glennon will be forever missed by so many of his "other family members" like us and the other parents that fight a brave battle with our own children's cancer every day. It hurt the adults so much to see all the Glennon children who is battling their own cancer look death right in the eye and smile back at it.

Hannah got sick this weekend with a urinary tract infection. The GU doctors weren't surprised at all, they even said they were expecting it. This will be a repeated problem until her stint is removed after she finishes radiation. The good news is the medication for this is fast acting and helps tremendously. I can also tell the radiation is beginning to take it's toll on her. She continues to loose weight and is becoming so fragile. Her spirit and spunk are the same as always though. Wish we could get her to eat and drink more but it's a struggle getting her to eat the bare minimum.

We're going to put our tree up Wednesday, Terry and Jake pinky swear-ed on it yesterday. I'm not going to decorate anything but the tree though ... and I'm going to hope I can get some shopping done between now and next week ... the wrapping probably won't get done but I don't think anyone will mind too much this year.

Take care ... Love, Cindi

12/24/2003
 We've all been doing ok this past week. I'm absolutely swamped with trying to get us ready for Christmas. Hannah decided she wanted to get her favorite teachers and principal something for Christmas ... then decided to get something for all her Costas Center nurses ... then wanted to make sure all her nurses on 4 North got a little something .... then she wanted to get a little something for all her radiation friends and believe it or not she even wanted to take something to her favorite Volunteers and door greeters! This is ALOT of people!! She had no problem picking out the little childhood cancer related items, but it was mommy who had to wrap all 78 of them! It took us the entire day today to deliver them.

Dr. Kelly gave her permission to attend her school Christmas program and we went this morning. How she loved being back in the environment of all her friends and teachers. Trust me when I tell you they were all so happy to see Hannah too. We were sorry we couldn't stay longer, Hannah was wiping away tears by the time we got out to the van.

Hannah continues to have problems and consistent pain with her bladder and urinary tract. We are at the Costas Center 2 and 3 days a week having counts checked and updating her urine cultures. She continues to have white blood cells in her urine and so far nothing has helped to clear it up. Dr. Kelly feels radiation has attributed to the problem immensely. He told me today that it would probably get worse before it gets better because she has to have alot more radiation that she can not skip. Her radiation oncologist will not let her take a break from the treatments either. Her skin has just started turning that blood red and purple color from radiation and I just hate it! They gave us a special kind of lotion to use before and after treatment but I can't tell if it's doing any good or not.

Hannah has also started having problems with both her hands and wrists. They are extremely dry and have raised little bumps on them and occasionally they will turn blood red ... out of no where. It really hurts and nothing helps until the pain wears off. We discussed this at length with Dr. Kelly today and he is concerned as well. He decided we need to consult neurology about it. He is afraid they may want to treat her with drugs though and of course introducing her to new drugs at this point could very well mean side affects and those can be worse than the symptoms sometimes.

We have received SO MANY beautiful cards and gifts in the mail this week and there has been lot's of deliveries to our home. There have been several fund raisers for Hannah and I can't wait to tell you all about that! There are so many wonderful people out there. We have been so blessed by so many.

I promise I will catch you up on what's been going on these past two weeks and send updates as soon as I can catch my breath.

Merry Christmas from all my family to all of you and your family!

Love, Cindi, Terry and Hannah

Gotta Run ... See Ya ... Have a Great Day!
12/24/2003
 One of our very, very favorite Christmas Songs ... I'll never forget when we explained to Hannah how the song reflected the true story of Jesus when she was almost 4 years old.

I remember vividly how cute she was when we tried to explain the part of the song that says "Did you know that your baby boy has walked where angels trod? When you kiss your little baby, you kiss the face of God". She had a hard time grasping that! Now she tells everybody that will listen to her what that sentence really means.

Mary, Did You Know?
12/31/2003
 I know it's been a while since I've updated you all on how Hannah's doing ... but I have been absolutely swamped!

Hannah did get to come home from the hospital finally on December 23rd ... we were really sweating that one. She didn't really enjoy Christmas like she has the past years but that's understandable too.

Everything was so rushed. I never got the opportunity to take her out to the mall or drive her to see all the Christmas lights, etc. I finally got the opportunity to go Christmas shopping for my own kids on Christmas Eve. I got up early and had to be back home by 3:00 pm in order to visit with my oldest sister and her husband. Wrapping, yeah right! I did what I could and used lot's of bags when I could. The cardboard shirt boxes with Famous Barr or Sears on the top looked good to me at 4:00 Christmas morning. I just stuck a bow on them! I even used a pretty permanent marker to write the names on each package.

We were really looking forward to the candlelight service at the church Christmas Eve night ... but Hannah was so tired and wanted mommy ... I figured we'll go next year.

On Christmas morning Hannah slept in until 10:00 am and for that I was grateful because I didn't even get to bed until 6:30 that morning. When she finally did wake up it was because Lisa and Brian were pushing her to! Who's the real six year old here? When she did open her gifts she was grateful but not excited ... and I just hated that for her. We're approximating that she had around 200 gifts this year. They came from wonderful neighbors, our church, our community, many cancer organizations, and from relatives that wanted her to have a nice Christmas morning.

After opening gifts Daddy cooked breakfast, as he does every Christmas morning, because I'm too exhausted to do it myself! Then the phone started ringing with so many people calling to just wish Hannah a Merry Christmas.

Despite Hannah being sick, and Mommy not having time to buy even half of what I needed to, it was still a very Christmas. Hannah bought Mommy a darling little sterling silver ring with a little pink star on it. She was so proud of it! It's something I'll cherish forever. Papa took her up to a little craft store in Staunton and she picked out a georgous white angel blowing on a bowl of wishes and making them come true. What a precious little angel she is.

There's so much more but I won't bore you with all the details. Hannah has continued with her Radiation every day and it's really starting to take it's toll on her now. She's loosing so much weight that I'm getting worried. When I rub on her back now all I feel is her spine bone sticking out! Before radiation I could feel only her back when I rubbed on it. Hannah LOVES the staff at radiation and they LOVE her too. It seems this is the story of her life doesn't it. Every single day that she has radiation she gets to pick something out of a special area that were donated just for her from Friends of Kids with Cancer. I don't think it's any surprise that they are aware of everything she likes.

We're here at Cardinal Glennon for Chemo. Dr. Kelly decided not to give her the big guns because of the trouble with radiation. She only got 2 small ones today. Hopefull we will be able to go home tomorrow with fluids (for 2 days).

Love, Cindi and Hannah