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03/01/2004 |
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| Hannah is doing really good right now. She went back to school Monday and she was estatic about it. She had to miss Thursday for a doctor appointment and again on Friday because her counts were a little bit low ... and she's trying to catch a cold.
This week she is scheduled to go in Friday morning through Same Day Surgery and have her stint removed! Hurray!!! It's been in since the second major surgery in November and has caused nothing but problems since then. If all the tests show everything is healed and appears to be normal it will come out and she should come back home the same day. We have St. Baldrick's Saturday so she has to be better!
Dr. Kelly wanted to schedule chemo this Thursday but couldn't because of the surgery the following day. I'm not sure what day next week we'll go in ... it will all depend on how things go Friday morning.
Besides trying to catch a cold she is doing really well. She's enjoying her new one pound puppy (Angel Baby) that Papa got her for her birthday. She's also trying to help mommy figure out how what to do with the new princess bedroom remodel ... we're still working on things ... but the guys are chomping at the bits to get started.
She goes to Wednesday night bible study with our neighbor and her children. Joshua is Hannah's age ... and she loves going. Last Wednesday she got to throw a pie in her teacher's face ... all the kids did. She's learning how to read the testaments too.
She finally got around to opening all her birthday cards and gifts. My goodness! She got SO MUCH STUFF!! She opened 55 cards, received 24 gifts, and had 7 deliveries! How's that for a haul. She is one loved little girl that's for sure.
For a St. Baldrick's promotion, one of the news channels are going to be at Cardinal Glennon and will be talking to Hannah about what this fund raiser means to her. That's a no brainer she says ... research means a cure! I'm not sure yet if it will be Thursday or Friday (while she's there for surgery). I will try and keep you posted.
All our love, Cindi and Hannah
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03/05/2004 - Surgery Update |
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| After a very long day we are home. Everything went very well this afternoon when GU removed her stint. Dr. Cummings told us the inside of the bladder looked good (compared to what he thought it would look like after 4 months of wire poking around in there). He will need to monitor her kidney and bladder function closely with ultrasound and CT Scans now ... and for the rest of her life.
He also told us should she need an additional surgery to remove what's left of the tumor that he will be in the OR with her surgeon to assist in reinserting the stint (if necessary). He is a SLU Urologist who has been filling in for Glennon due to the resignation of the former GU doctor. It took Glennon months and months to find the right replacement and in the interim Dr. Cummings helped out. Now that the new replacement is here he is going back to SLU ... however, he generously agreed to remain Hannah's GU of record as he is so familiar with her case now. We willingly accepted his offer and he agreed to make the necessary arrangements.
Hannah is so much like her dad when it comes to waking up from anesthesia ... she gets really MAD and screams her lungs out! Then she gets a pounding headache and cries even harder. Once she finally wakes up though she's fine.
The best news is that she gets to stop taking the 4 medications she was on because of the bodies resistance to the stint ... thank goodness!
Hope to see you all tomorrow at Helen Fitzgerald's for the St. Baldrick's fundraiser. Hannah ended up with 8 shavees on her team ... The Hannah Banana Baldie's. The address of Helen Fitzgerald's is 3660 S Lindbergh Blvd, St Louis, MO.
Thank you for all your support and prayers.
Love, Cindi and Hannah
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03/09/2004 - St. Balderick's |
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| At the fund raiser last Saturday ... Hannah Banana's Baldies team took first place in the amount that was raised as a team! Way to go team!! She raised (to the best of our knowledge) with all the donations and auction items approximately $10,000.00!!! Now that's alot of money! The total fund raiser was in the neighborhood of $75,000.00. Brett Syburg (owner of Helen Fitzgerald's) raised over $20,000.00 from the St. Louis business people he is associated with. He also shaved his head and appealed to everyone who has ever known anyone with childhood cancer to get involved ... spread the word and donate, donate, donate. Research is the only hope these children have.
Hannah had 9 shavees (which was also the most) and she got involved on the stage and helped shave everyone of them too. She loved it! Hannah had a woman by the name of Dale Niemeyer shave for her. What a brave and wonderful woman she is! Dale also received a special prize for raising the most money on a individual basis. Hannah presented Dale on stage with a gift ... a white bucket hat.
Hosting the event was Vic Porcelli from 101.1 the River. What a fantastic job he does. Hannah adores him and my family thinks the world of him too. I wonder if the St. Louis public realizes that this was Vic's day off and he agreed to come out on a Saturday evening and work this event ... all because he cares about these kids. Producer Tim from 101.1 the River ... what can I say about him besides he is very, very special. This also was his day off and not only did he come out and work this event HE shaved his head as well!! He looks great without hair too ... he has the face for it. Thank you Vic and Tim for giving up your time with your families and working and shaving in this event to raise money for Childhood Cancer Awareness. No wonder Hannah thinks the world of you two!
Thank you to everyone who shaved their head for Hannah ... who worked raising money to support this cause and for making donations in Hannah's honor. We all know how special Hannah is and this is just one more way that shows how she has made a difference in the lives of others who have gotten to know her.
All our love, Cindi and Hannah
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03/09/2004 |
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| I found out today that Hannah will go in for Chemo on Thursday. She will be admitted for 24 hours and come home with fluids. She is only going to receive a reduced dose of two of the three chemo drugs ... not sure why only the two drugs this time until I ask on Thursday.
She's been sick with a cold or probably allergies. These past two weeks she has complained of headaches all the time. She has the nasal drainage but no fever yet. She even came home from school early today with a headache. We are going to try a nose spray in the morning and see if that helps anything.
She told me today that with the new baby chickens Papa bought her ... and the new baby blue Parakeet ... and new baby fishs' ... and the new baby puppy that all together (including her barn cats and older dogs) she has 48 pets! She is really proud of herself. Now Papa and Hannah are trying to find a baby squirrel ... Mommy says no way ... but they are looking anyway. I told Hannah we would let Dr. Kelly be the deciding factor ( I think they are nasty and gross ) and I'm sure he will agree with me.
Last Sunday night a little boy named Jeremiah Buske died after fighting a tough battle with brain cancer. He was only 9 years old and had been in remission for one year exactly. His parents' names are Mary and Gary and I had gotten to know them pretty well. Jeremiah fought his battle for one entire year during 2002. During the year 2003 he lived his life to the fullest ... playing football at school and going to camp and living a normal life. Then after a one year check up and during a CT Scan they found 3 new small tumors on the brain stem. This means they were inoperable and his only hope was chemotherapy. Dr. O'Connor tried every chemo drug there was and still the tumors grew. Then he became so ill they had to place a shunt in his skull ... then he got an infection and started having severe seizures. They were at Cardinal Glennon since January with him and were told one week before he died that his battle was over and unfortunately he would not win. When I spoke with Mary at the hospital a week ago she used the words, "Jeremiah's journey on this earth has come to an end". Yes, Mary fell apart but her husband Gary stood strong and never wavered. The whole two months they both stayed beside him and Mary would leave at night sometimes while Gary stayed with Jeremiah (but only because Gary made her). They never once gave up hope and prayed steadily that God would grant them a miracle. Last Friday while Hannah was in for surgery I went down to PICU to say my goodbyes to Jeremiah. This time Hannah chose not to come with me ... I'm not sure if it was because she was going to go into surgery or what ... but I went alone. When I went in the room it was decorated with all the hundreds of cards and posters and pictures from people telling him just how much he was loved. While Hannah was in for the two weeks with Radiation Burns she learned how to make God's Eyes out of yarn and went over and gave one to him (and all the other kids on 4 North). I was amazed at how peaceful Gary and Mary looked. Their priest and a nun was with Jeremiah while we talked for a little bit. Jeremiah's little four year old sister was in the room playing with arts and crafts ... not understanding at all what was going on beside her. Mary told me that the Sunday before Dr. O'Connor had told them a day or so ... this was Friday and his stats were very stable. By the time the parents were told it was too late for them to talk to their son and for him to let them know he understood what they were saying ... that hurt Mary very much. After visiting with Mary she told me how much comfort she got from talking with me ... another mother who knew exactly what it was to have a very sick child and to always wonder if they would survive from one day to the next. I know exactly what she means because I too feel the sameway. I assured her I would always be there for her and asked if I could call her sometime. I only stayed a little bit and after hugging Mary and Gary I went over and told Jeremiah to have a good life in Heaven and that little Bailey, Markie and Dakota would meet him when he came up ... and that we would all see him again someday. When I looked down I saw he was holding the God's Eye that Hannah made for him. Mary said he really liked it because Hannah had made it for him and used bright colors. I wondered how terrible it would have to be to sit in a room with your child just waiting for the moment when his heart would stop beating ... I thought seven days was much too long. I have cried a river of tears since then.
At the St. Baldrick's event Deb and Dave Wittman (Markie's parents) were presented with the most beautiful hand painted portrait of Markie by Brett Syborg. Brett's brother painted it just that morning. There wasn't a dry eye in the room from anyone who knew this little guy who loved life and never lived a day without a smile on his face.
I've yet to tell you the story about little Dakota. I'm still grieving for a little two year old boy who loved Sponge Bob Square Pants and Bob the Builder.
There has to be a cure found for these precious little children. There just has to be!
Please keep Jeremiah's family, Markie's family and Dakota's family in your prayers.
Love, Cindi
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03/09/2004 |
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| I need more room in my address book for more people who are asking to be put on Hannah's prayer/update list. I am going to delete Jackie's children and just forward it to Jackie then Jackie can forward it to her children.
Will you all e-mail me back and let me know if you still want the updates sent to you? Or if you know of a way that I could cut down on the number of people I send it to because you will forward it on for me.
Please let me know.
Thanks
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03/12/2004 |
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| We got home this evening with our big bag of fluids ... we are glad to be here too. Even staying one night is about all we can handle these days. She received the big dose of chemo ... VAC. She hasn't gotten this since last summer when it broke her body down so bad. I'm a little nervous about it but I know she has to have it. Dr. Kelly reduced the dose 25% to see how she will tolerate it this time.
She had a awful headache last night, she said it felt like her head had been "broken in two" and one side was unbearable and the other was ok. She's been having these awful sinus headaches, runny nose and a light cough for over a week now. After last night we started her on a antibiotic today and hopefully she will feel better soon.
Her Papa has been keeping her in baby "everything" these days. They both have spring fever. She has been begging me for a baby squirrel for a few months and I have been adamant about telling her no way. She decided we would let Dr. Kelly be the judge on that. This morning we asked him and he agreed with mommy completely. Hannah just fell apart! I can't believe how she screamed and cried for over 2 hours. Her little heart was broke in two ... she has been anticipating this for months. Everyone came in her room to try and make her feel better and some even tempted her with presents, but it did no good. I think she was just having a "good cry" because she needed to have one for many reasons.
After I let her cry it out I laid down beside her and she hugged me and cried and cried and told me she was really upset about her baby squirrel ... and I asked her what else could be upsetting her and she told me about it. Recently her school has been transporting kids from the private schools in town for latchkey purposes. Well some of these new kids have never been told about Hannah. Zion Lutheran students are aware because they had a large fund raiser for her and we know many of the people there. Hannah told me it was the kids from the Catholic school that were teasing and harassing her on the school bus on the ride home. She told me they call her names and make fun of her because she looks like a boy and has no hair. I can't tell you how much I wanted to murder some kids in that moment ... but I knew for Hannah I had to put on a brave front. I asked her why she didn't move to another seat and she told me she did but they would just follow her. I asked her why she didn't explain to them that she was sick and didn't shave her head on purpose ... and she said she did but they didn't believe her. I asked her why she didn't tell mommy or Mr. Skertich (her principal) and she said because it was more their problem than her problem. I asked her what she was doing while all this was going on and she told me she just looked out the window and eventually they would stop. Finally it was the opportunity to make her understand what the true meaning of ignorance was. Her school has been so wonderful about everything and every student in her school treats her like the precious little angel she is. She has never been treated like this before and didn't know how to deal with it. I wondered how she could move from one seat to another with these other kids following her and belittling her without telling anyone about it! Of course Hannah and I both know that after a conversation with her principal that this will stop immediately. She told me she would rather not ride the bus home though ... until the latch key program was over. I explained this would go on until the end of the year and she cried all over again and said, "but that's my bus, and my friends, and no one has any business making it a bad thing for me". Hannah loves her bus driver and many of the students and has always looked forward to that time ... after all she was doing "big girl" things and proving she could do things without mommy. So I'm not sure what we'll do now.
I asked her what else could be upsetting her so much and she told me she hated Cancer. She said she was thinking maybe she didn't want to be a cancer scientist when she grew up after all. She told me she just wanted this to be over.
My cousin had come to visit the night before and brought with her a beautiful blonde wig for Hannah. After her crying spell (and agreeing to find a compromise somewhere on the stupid squirrel) we started playing with the wig and one of her nurses brought up a leg high pantyhose to cover her head with before putting the wig on ... wow! She kept looking in the mirror over and over and even cried because she looked so beautiful! She looked like the old Hannah again! I was going to cry and Hannah told me not to! I couldn't believe the difference it made in her self confidence today. Because she had this big heavy backpack of fluids I put her in a wheel chair and before we left we had to go down to the Costas Center to have an Insunflon port put in her arm and she had her wig on and when people seen me then Hannah they were confused and Hannah told me to tell them this was her twin sister, Anna!! She really got them good too! She laughed and laughed ... because of all the crying she had done earlier her face was all red and her eyes swollen so it was easy to fool people. When we came home she told me to hide the van so she could walk to Papa's and knock on the door and surprise him. I stayed in the car and she walked up to the door with her heavy backpack and this wig on and Papa opened the door and Hannah said, "I'm looking for Hannah is she here"? Papa didn't recognize her!! He told her that Hannah was on her way home from the hospital and to have a seat and wait for her ... he told us later he thought it was one of her friends from the bus! Hannah laughed and laughed and laughed! Papa was so shocked when she took the wig off ... he couldn't believe it was her. I think we are going to have a blast with this wig.
Please her in your prayers ... her little feelings have been hurt and despite the fact that she now understands the word "ignorant" she is still fragile.
Love, Cindi and Hannah
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03/19/2004 |
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| Took Hannah back to the Costas Center Thursday morning for her first CBC since starting back on her VAC and both Dr. Kelly and I were impressed!!!! Her white blood count was only 0.36 however, her platelets were 114 which is very good news!!
She hasn't run a fever since getting sick with allergies but we've been treating her and treating her and just when we think she's getting better she gets sick again. She came home from school early Wednesday and I didn't send her back today either. Dr. Kelly put her back on another round of antibiotics and she's on her inhaler, Zrytec, Dylsom and of course her Nupragen.
After the Costas Center Thursday I took the opportunity to run her up to Fairview Heights to look at some princess bedroom furniture and we ran in the mall for a few minutes and passed by a Hermit Crab stand ... yes, we came home with two new crabs. They are so cute with their little shells painted! The bigger one named Herbie is orange with white and blue flowers and will grow into another shell that's painted like spongebob square pants. The other crab named Derbie is solid orange and will grow into a new shell that's painted like the flag. She is so excited she can barely stand it! She kept telling me she didn't feel good and didn't want to look at furniture ... but when we ran in the mall a minute she was all the sudden feeling good and spent two hours learning all about how to take care of these critters. Yikes!
The crew is coming in the morning to start tearing out the new Princess Bedroom. We are all ready for this I think ... except Hannah. Shelly told me that Cole found someone who was generous enough to donate all the electrical supplies for her new room. They had already found a lumber company to donate all the lumber supplies so things are really looking up! When I put her to bed tonight it was about 9:30 pm and she was very tired and I told her they would be here bright and early at 8:00 am and we would have to get up by 7:00 am ... she told me,"That's ok Mom, you can get up with them and I'll sleep in! I told her fat chance of that happening! They would be swinging hammers and tearing out walls and ceilings and her bedroom now is just right across the hall from the new one.
I'll keep you all posted.
Love, Cindi and Hannah
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03/22/2004 |
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| My computer is out!! The modem AGAIN!
Hannah is still coughing and not able to go to school. She goes back tomorrow to the Costas Center for counts again. Hopefully we will be able to find the right medication to kick this infection in the butt!
Hannah says to tell everyone hello!
I'm over at Lisa's house using her computer right now ... I do check my e-mail at the hospital too ... but not at home for a while.
Take care,
Love Cindi and Hannah
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03/30/2004 |
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| I am back on line ... for now. Got the new computer last nigt and this morning after setting it up I found the plasma screen had a black round faded circle right in the middle of it! After calling Sears they told me I had to bring EVERYTHING back ... or it would invalidate my warranty!! Brrr!!
Hannah is doing good right now. She is finally over her runny nose and cough spell. She's enjoying all of her new babies and trying to catch up on some of her homework. We go back in the hospital this Thursday for another round of VAC (chemo). Supposed to just be another over night and home with fluids for another 24 hours. Sounds real good to me.
I've got lot's of e-mails to answer so be patient and I'll get to them as soon as I can.
Thanks!
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03/30/2004 - Need a favor… |
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| Hello again,
As you all know Hannah has been promised a Princess bedroom make over. Terry and I were going to put it off until this summer and try and do alot of the work to the bedroom ourselves ... and .... turn alot of it over to a contractor.
I was approached and asked if they could find donations and people to make her room over instead of making Hannah wait until this summer. I was very hesitant to ask others to come into my home and make updates to it without charging me. Eventually I was convinced that it wasn't what I wanted that was important but what was important to Hannah.
I thought about it for awhile and told her to see what she could find out then I would make our decision about allowing others into our home. In two days she called me and told me they had 50 volunteers (no kidding) that would love nothing more than to come out and gut the old bedroom and rebuild her a beautiful one. I was even told they had a designer, engineer, architect and anything else that was necessary. She told me she had found some places that was willing to donate materials for the project as well.
Two weeks ago I was informed that the majority of these men were shipped to Iraq and the others were busy with school and their children in sports events. Now we are down to 3 guys which are all under the age of 23 and have no experience.
I was ready to call the whole project off ... I was very upset. But looking at Hannah and all the shopping we were doing picking out furniture and bedding made me decide to swallow my pride and get busy.
I asked our neighbor (Luke) who is not only a good friend but a architect too to draw up the plans for her room. I have been busy calling contractors out to bid the project and they are all so busy they can't even come out here for 3 to 4 weeks! The start date could even be months from now.
Terry and Luke decided they would try the bay window play room addition dormer themselves. Terry will have to take a week of family leave to do it ... and won't receive a paycheck ... and Luke said he would take the whole weekend and devote it to helping Terry with the project. They are two men though and building out two large dormers in her room is a huge job. There is no way they can get it done before summer by themselves.
If you know of anyone who would be qualified to take on a project of this size and is reasonable please, please, please ask them if they aren't busy with anything right now if they could not only bid the project but work on it right away too.
I guess this is what I get for going against my gut feelings ... but it's too late to turn back now. Hannah is so excited about her room that she can hardly wait! It's nice to see her so excited about this!
Have them call or e-mail me right away ... my home number is 618-637-2823 and my cell phone number is 618-972-6901.
Thanks !!!!!
Cindi
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