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07/05/2003 |
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| The reason I haven't wrote to give an update on Hannah is because we've just lived through yet another tragedy ... this time with our son Brian.
Late Wednesday night we received a phone call from the Staunton hospital to come to the ER immediately. Again, they would tell us nothing except Brian had been brought over there by ambulance. Once we got there we found Brian to be unconscience and they were trying to stablize him. They told us he had a heart attack. They told us there were other things going on too but at the time the main concern was his heart.
Brian has just accepted a new job (in removal of toxic chemicals) and is supposed to start one day next week ... which means he is between jobs right now and has no insurance. The Staunton hospital tried all the St. Louis hospitals as well as Oliver Anderson and we were told they would not accept him. Then the hospitals all came up with some other excuse like they were full or had been notified that there was major trauma's coming in ... etc. The Staunton hospital made the decision to transfer Brian upstairs to their ICU room as they needed to get the monitors on him. Needless to say, Terry and I were very upset. They told us they did not feel Brian was in any danger of dying, but they also did not feel they were equipped to handle all the problems he had going on at that time.
Terry and I spent another long night at the hospital praying for God's healing once again. Sure enough, he answered yet another prayer for us. The following morning a social worker came to see us and started making phone calls. Again, the no insurance was a huge issue and the St. Louis and local Illinois hospital's would not take him. Finally, she found a huge hospital in Springfield that accepted him and we were on our way by 5:00 pm. I was given 30 minutes notice before the paramedic's would arrive so I ran home and flushed Hannah and grabbed some things for Brian from his apartment. I followed the ambulance and from Staunton it was only about a 45 minute drive. The hospital is huge and the nurses and doctors there were all extremely kind. Brian came around about noon Thursday and he knew we were transferring him out of Staunton and he was so upset, he knows he has no insurance and that this bill would somehow have to be paid for by him out of his pocket. Of course this added stress is the last thing he needs right now, but where there is a will there must be a way.
We went up to visit him yesterday and his spirits were very poor ... he is really upset about not being able to start his new job this upcoming week. Today they let him get up and walk around and they are running all kinds of tests to see how much damage there is. He looks good though ... and even ate his liquid dinner tray.
So once again, I ask all of you for your prayers. As your saying one for Lisa and Hannah just go ahead and throw Brian in the mix too. That way we should have it all covered.
Love, Cindi
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07/10/2003 - Hannah and Bryan |
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| Brian is doing fine. We've been waiting to get him in to see our internist since Brian came home. Because it's a first appointment and tests will need to be done the soonest he can see Brian is next Tuesday. All is fine though, he's doing great.
Hannah came home from the hospital tonight. I didn't think she was going to after what happened last night. She was in severe pain, her head hurt so bad she couldn't stand to have any type of lights, even the little mini flashlights the nurses use at night time. She said the light hurt her eyes! She became hysterical and later violent ... we had to call and get some sedative's ordered for her. Even with oxycodone in her she was wild. The doctor's and I talked about it this evening and we're just not sure if it was an allergic reaction or what ... but next time before she get's her VAC dose we will sedate her first. I sure hate that we will have to do this, but we could both barely stand what was happening to her last night. Because she went into this sneezing frenzy last time and again this time her doctor and I decided we would also start her on Zyrtek a few days ahead of time too. She is a work in progress for sure!
She slept off and on today, then finally woke up late afternoon and she was feeling much better. Even with all the medicine's they poured into her to control the vomiting she still had rounds of it this morning and this evening.
She got to practice giving her nurse a shot today! I missed it because I was talking to the doctor's but sissy got to see the whole thing. She took pictures too. Her nurse Katie said Hannah's shot was better than when mommy practiced on her!! I think Katie was just sucking up to Hannah is all.
Naturally Hannah is back to not eating and drinking and this time I asked the doctor to write it in her discharge orders so Hannah could see it as it is plastered to the refrigerator that IF SHE DOESN'T EAT AND DRINK SHE HAS TO GO BACK TO THE HOSPITAL!! Hannah just said, "mommy put you up to that didn't she?" I can't get anything over on this child!
Gotta run ... will try and catch up with the tons of e-mail when I can ... thanks for your understanding.
Love, Cindi
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07/14/2003 |
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| Hannah has not been feeling well all weekend ... which is to be expected since she received her big dose of Chemo Wednesday. She looks so sick and pale. Trying to get her to drink is so difficult ... Papa can get her to get a little though. Just amazing when I think that last week she was eating like a little pig!
Well I guess it had to happen ... Hannah came crying and screaming in the house this morning that she accidentially got her Neuphrostomy tube caught in a lawn chair and when she stood up she jerked it and it came all the way out of her body!! She was scared half to death that something bad was going to happen to her. When I could get her to settle down a little I looked at the site and not only was it stitched into her kidney, but it was stitched into her skin as well. The tube was completely out of her body and I could tell where it had been stitched in at one time. Dr. Kelly is out of town and before he left yesterday we talked Friday about when it would be able to come out anyway. She has not had any trouble with the urine bad clamped off this past week. The doctor from SLU who placed the tube looked at it two weeks ago when he changed the O ring and restitched it back in place. He told us that it was "only a matter of time" before it came out. He said we were really getting close. But like I told Hannah we were supposed to repeat the CT scan and ultrasound tests first just to make sure! It was awfully nice of her to have just saved the insurance company alot of money because she wouldn't have to go back to surgery to have it taken out!
I spoke with Dr. Gale three times today. She had alot of blood in her urine which we both suspect is from the irration of the kidney tube being pulled out. She's also been in alot of pain all day today. I've been alternating between Tylenol and Oxycodone. I sure know when the Oxycodone has worn off.
The game plan is to take her in tomorrow morning and have the CT Scan and Ultrasounds repeated ... and Dr. Gale said he hopes it doesn't have to be reinserted! I've been saying prayers all day today that this won't be the case. She also looks so very pale and I've got a feeling she needs some red blood.
So who knows what the day will hold for us tomorrow. She has to have her weekly dose of Vincristine Tuesday, so I wonder if he won't just keep her overnight.
Please continue to keep her in your prayers.
Love, Cindi
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07/15/2003 |
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| It was one of those days at the hosptial that we had to hurry up and get there asap .... just to sit around and wait for 4 hours! Because Hannah wasn't "scheduled" for this test today we had to wait till they could work us in. They said 1:00 pm ... but weren't able to do the test until almost 5:00 pm. The test they done on Hannah had to be done in segments of minutes. After they injected the dye they had to take pictures immediately, then wait ten minutes and do more, then wait 30 minutes, etc. These tests were inconclusive and both Dr. Gale and I were trying to hide our panic that the tube might have to be replaced. Last Friday was Dr. Alonzo's last day in St. Louis, he has moved to Chicago! Eventually they done a Floroscope (sp) which showed that the uretor was in deed open enough to allow urine to flow to the bladder. The opening of the tube certainly wasn't as wide as the left kidney but that's ok! Another prayer answered!
Dr. Gale and I both insisted that Hannah stay and have IV fluids flush the dye out of her body ... even though by this time it was getting quite late and Hannah hadn't had anything to eat or drink the entire day. She was tired and didn't feel good and just wanted something to drink and to go home!
The first thing we always do as soon as we get to the Costas Center is draw blood and send it to the lab asap so we know what's going on with her counts. She was so pale today and she looked just awful. I knew she needed red blood and I'm not a doctor! She's also dragging and has no energy to speak of. Dr. Gale really wanted to give her blood today but decided to wait until tomorrow when we go back for another all day trip for her Chemo.
I'll let you know what's going on after tomorrow too.
Love, Cindi
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07/16/2003 - Early… |
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| Today was somewhat of a repeat of yesterday. Hannah's counts were as they expected them to be ... quite low. So much so that not only did she receive red blood but they also transfused her with platelets too. By the time we left the Costas Center about 3:30 today she actually had pink lips!
She isn't feeling well at all. She's been crying all day with pain in her tummy, her head and now her ear. She's had a summer cold and I am wondering since we've been battling it for two weeks now if it isn't a sinus infection. She does have a history of them. Her ear looked "pink" today but not "red". All day at the Costas Center her temperature stayed in the 99 degrees area ... but wouldn't you know when we got home it started creeping up into the 100's! I'm just waiting for the magic number of 101. Before I tucked her in it was 100.8. I suspect we'll be back over at Cardinal Glennon before the night is over though. So does Dr. Gale. He said he was surprised we weren't there already!
He told me just before we left today that this is all very normal and to be expected. The fact that she refuses to eat and drink is no longer the federal case it was with her kidney's functioning properly. He said most children are much worse by now that what Hannah seems to be. He told me something else I didn't know today too. He said with each VAC treatment that she receives every 3 weeks that she will get progressively worse. I didn't realize that.
Today Hannah was put in touch with the "Make a Wish Foundation". She gets to wish for anything she wants and they emphasized anything. They promised they would help her make her dream come true. She was too sick though to even answer them let alone thank them for their generous offer.
Please keep Hannah in your prayers.
Love, Cindi
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07/16/2003 - Late… |
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| Sure enough we are back here on the 4th floor. Hannah was hurting from the left ear last night and I gave her the numbing drops, which helped immensely. She continued to run high fevers all night, but didn't hit the 101.0 so we just stayed up most of the night. She was vomiting and refusing to eat and complained of tummy pain.
This morning I had to put my foot down to get her to eat 4 bites of cereal and 2 ounces of water. Her fever was still running at 100.8 so after watching her like a hawk I noticed bruising all over her legs and arms. I called the Costas Center and they were extremely busy and didn't call me back ... so around noon I called again and Sue said to bring her in immediately. I took her temp just before we left and it was 101.2. I also brought an overnight bad.
When we got to the Costas Center she was so sick ... just the walk to the car and long walk to the hospital out of the car wore her out. Cardinal Glennon is remodeling and you can't pick up or drop off at the doors anymore. With the heat it just wears her out to have to walk! They put her in a bed in the Costas Center, took her temperature and Dr. O'Connor looked in both ears. They were both very red and one was bleeding or had been bleeding.
Yesterday she was given platelets and red blood. Dr. O'Connor just assumed she would need antibiotic's for her ears and probably would send her home. Then he walked down and got her blood tests and was blown away. Yesterday her platelet count was 12 and today it had dropped to 6. Hannah also needs red blood again too. Hannah's body either rejected the platelets for obvious reasons ... or ... because of the infection her body just gobbled them up. She has had platelets before but she was an inpatient at the time. If this was just a fluke thing then we will just continue giving them to her around the clock. If her body refuses to accept them we are in trouble. The body needs platelets in case she has any bleeding ... this is what clots the blood. I don't have to explain why she needs red blood.
Needless to say she will be here for at least 3 days ... maybe more. We have to get to the bottom of what's going on with the platelets and red blood. We are in room 419.
Please continue to keep Hannah in your prayers.
Love, Cindi
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07/17/2003 |
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| The feelings I'm having today are those of what I had while she was in PICU. Hannah is bleeding in her mouth and around her gums. She also has blood in her urine and from her bowels. I've already told you about the blood in her ear. Her arms and legs are all bruised and she is just burning up with fever. We are now in the 102 range. She refuses to eat and drink so they're feeding her in a bag. She's on a drip of antibiotics and they plan to give her more blood in the morning.
Yesterday at the Costas Center her platelet count was 12 before she got the platelets transfusion. Today it was down to 6 which means we took a step backwards. First thing they did after bringing her up to the 4th floor was give her more platelets and they were finished at 8:30 pm. At 9:30 pm they took another blood count and they had only jumped up to 23. They will decide in the morning about transfusing her with more platelets. When your blood is tested the magic number they are looking for is 20. So what we're hoping and praying for tonight is that she will at least keep the count of 23.
Tonight about 11:00 pm they tell us Hannah has to be moved in with a roommate. There is a little girl down in ER that has just been diagnosed with a brain tumor and they want her to have a room all to herself as she will have alot of family. Not only that, but when your first diagnosed they always want the family to have a private room. I completely understand that. Hannah however didn't comprehend this quite as well as mommy. She cried and cried not to be moved. We went over the options and because of the boy to girl ratio and crying infants there was not much of a choice. The girl Hannah moved in with was in a terrible car accident a week ago and why she is up here on the cancer floor I'll never understand! When the girl was admitted the floor was not full at all. Now of course it is and we get the short end of the stick. This little girl will only sleep with the TV on ... Hannah can only sleep if the TV is off and her "Sleep Sound In Jesus" music is playing. Because we got moved at 11:30 tonight we made all kinds of noise and the mother of this little girl is in there throwing all kinds of fits! Yikes!! I asked her nurse if we couldn't just take the pump and go home, Hannah would rest much better here. The tension in the room is just awful. No we can't go home ... just wishful thinking.
Because Hannah is so sick Terry took off today and the rest of this week too.
Gotta get back to her. Wish me luck ... and please, please pray for my little angel.
Love, Cindi
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07/19/2003 |
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| This morning Dr. O'Connor came in and told us Hannah's platelet count had dropped to 22 ... BUT her white blood cell count was increasing! This means that the daily nuprogen shots are working and her body is starting to make cells to fight off infection.
He was disappointed that after the last transfusion the platelet count still dropped, but intends to watch her closely. Because she won't eat or drink anything (without a battle of the wills) he decided to let us go home today around 3:00 pm. She was warned that if she spiked a fever over 101 and still continued to refuse to eat or drink we would turn around and go right back over there.
He was right about the eating and drinking ... on the way home she decided she wanted shrimp of all things! I was going on little or no sleep and exhausted but stopped at a Long John Silver's in Collinsville on the way home. She did pretty darn good too! Drank a whole orange soda and ate 8 pieces of those fried shrimp! I was so proud of her!!
When we get home and I take her temperature and she's at 100.8. So I gave her a long cooling bath and Tylenol and that cooled her right down. I just took her temp again and it is still in the 99's so it must have worked.
I have a funeral to go to in the morning ... a first cousin died from phenomena following what they thought was remission from lung cancer. I hate this damn disease, I hate it!
I know there are those of you who have started sending contributions to the Children's Cancer Research Fund and sending them in Hannah's honor ... and I appreciate that. I'm just sorry I haven't had the time to write or call personally to tell you so. I hope and pray someday that cancer is a thing of the past.
Love, Cindi
Gotta Run ... See Ya ... Have a Great Day!
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07/20/2003 |
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| Today I noticed both of Hannah's legs turning black and blue ... so we are back at Cardinal Glennon on the 4th floor getting another transfusion of platelets. Will keep you know more tomorrow.
Love, Cindi
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07/21/2003 |
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| We just got Hannah home from the hospital. She needed a red blood transfusion and IV fluids. Since she was in the hospital they decided to go ahead and give her the single dose of Chemo that she gets weekly. By the time we got her home she was screaming and crying her tummy hurt.
Sometimes I wonder when it will all end. She's so fragile and week ... and even with her being so sick the doctors just continue to give her more drugs to make her even sicker. This must be what they meant when they told us that over the course of the next year she will get "progressively worse". I can't stand it anymore and I'm not Hannah.
Your prayers of strength for Hannah must be working, she's hanging in there like such a trooper. Please continue to ask God to place his loving arms around her.
Love, Cindi
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07/24/2003 |
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| These past two days Hannah has been in good spirits and feeling good. She's laughed and joked around and even went outside to play for a half an hour or so yesterday. Her temperature still persists in the 99.2 to 99.8 but I'll take it. She is eating and drinking and I don't even have to ask her! I just put it in front of her and down it goes! According to our scales she's lost another 2 pounds and I've had to buy her some new clothes. I dug some of her summer wardrobe from last year out and even that is too big for her!
She's gone from 74 lbs. to 58 lbs. As you all know she was born weighing in at a whopping 10 pounds and never stopped! It's kind of odd to see her getting skinny.
I just know we're going to have a great weekend with her ... it will only last until she goes back in the hospital Tuesday for her big dose of Chemotherapy though I'm afraid.
Today Lisa wanted Terry and I to go duplex shopping with her in Edwardsville and believe it or not I called my sister Dee and left Hannah with her for a whole 4 hours today!! Hannah, Dee and I were all just shocked! Dee told me it was exactly what she needed at this time in her life ... she was home from work today still having a terrible time grieving over the loss of her dad. She said Hannah was the best medicine in the world (even though when Dee seen her she couldn't stop crying).
Brian is hanging in there doing the best he can. He started that new job two weeks ago and he says he likes it ok ... but he's still having a hard time I can tell. Lisa on the other hand is so happy and excited she can't contain herself. She is making me and Terry crazy! Her lawsuit is behind her now (thank goodness) and she and Terry went car shopping and she picked out this really, really cool convertible car and now she's shopping for a new place to live. This is really a bad time for her to leave, this family really needs her at home right now to help with everything that needs to be done with Hannah ... plus the last thing Hannah needs is for Sissy to leave too. Lisa plans to have a room in her house just for Hannah ... and Lisa promises to come home once or twice a week and spend the night here too ... but I just think it's one less burden Hannah needs to carry around right now. However, Lisa is 22 and I still feel the need to keep her here with me the rest of her life ... and since I know I can't do that I'm praying for the strength to help her along with her decision to live on her own. It's going to be really hard on me and Hannah but with all your prayers going on I'm sure we'll be fine.
Take care everyone and thanks again for remembering our family in your prayers.
Love, Cindi
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07/28/2003 |
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| Little Hannah Grace had a very nice weekend! Her spirits were good, she's feeling great, she continues to eat and drink with no complaints ... couldn't ask for anything more.
She's had playmates off and on this weekend (of kids her own age) and she's enjoyed every minute of that.
I will take her to the hospital Tuesday morning where she will be admitted in order to receive her "big round of Chemo". This is the VAC that she gets every three weeks, the dose that makes her so sick.
Thanks for keeping her in all your thoughts and prayers.
Love, Cindi
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07/29/2003 |
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| Today and tomorrow 101.1 "The River" (a St. Louis radio station) will be here at Cardinal Glennon Hospital. Hannah and I have both been asked to sit down for a one on one personal interview with Vic. The radio station is trying to raise money to benefit The Children's Miracle Network. I was told today that 99 cents of every dollar is donated back to Children's Hospital and Cardinal Glennon (both here in St. Louis) on a 50/50 basis. Hannah really got interested in this and started asking what they did with all the money people donated and the woman in charge told her the money is given to the programs affiliated with the Bob Costas Cancer Center here at Cardinal Glennon. I could go on and on about everything they do but I will just tell you that it's a excellent program. The one main reason I would like to support them is because no child, no matter what their circumstances, that is diagnosed with cancer will ever be turned away from this hospital, insurance or not. That's a wonderful thing.
I am not asking anyone to donate to this cause I am just letting you know that we will be on the air tomorrow. However, if anyone is looking to make a donation to a cause like this I would like to ask that you make it in honor of Hannah. Just have the volunteer taking the call to place her name in the appropriate slot.
Thank you ... and wish my little star luck tomorrow!
Love to you all,
Cindi
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07/31/2003 |
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| Yesterday morning Hannah was admitted for her "big chemo" dose. She was so like her old self these past 5 days ... I hated to take her. She kept her good spirits throughout Tuesday and when I tried to leave her and come home she became hysterical again. We were expecting it as she did this last time ... so we were armed with sedative medication but it didn't help ... there is no substitute for mommy I guess.
We gave her Claritin this time and it really helped with the sneezing and watery eyes. This afternoon she got sick and was crying but it passed quickly. Her eyes and nose areas are turning red tonight but it's just from the drugs. She even ate dinner tonight and after the dose of chemo she had this is a very good sign!
I hope you all were able to hear Hannah and I on 101.1 The River today. Hannah was absolutely fantastic. Vic and Trish were just amazed at her ability to laugh and cope. She won over their hearts just as she does with everyone she meets. Hannah was surrounded with Doctors, nurses and staff after she took her headphones off. It was kind of funny ... Hannah and I were looking at them like "what's the big deal". They were looking at us with these huge smiles and standing to applaud Hannah as she walked past them to donate her $10.00. There were many wiping their eyes ... and there's even talk she will be next years poster child for The Children's Miracle Network.
The River asked us if they could auction off some of "Hannah's Pooze" on the radio station and of course we agreed. We only had about 5 jars left so we ran upstairs real quick and made 10 more! The producer told us they were going like hotcakes and they expected to make alot of money off them. They asked Hannah to personally sign her name to each and every one! She was so cute ... she signed it so officially using her first middle and last name.
Later in the afternoon we got the idea to approach Dr. Kelly and ask him to go on the radio live with Hannah. She planned to ask him to donate a 12 x 12 and her real intent was to ask him to challenge ALL the doctors at Cardinal Glennon to do the same! And it worked! Dr. Kelly said he'd gladly donate and also asked all the doctors to do the same.
Things really went into high gear from that point. The nurses on the fourth floor said they'd also donate and within 10 minutes Hannah had pledge cards totaling $1,500.00! Hannah personally went to her Oncologists and asked all of them to donate a "12 pack" and of course they all agreed to just for Hannah. Many of Hannah's relatives and friends called in pledging their 12 x 12 and within 35 minutes Hannah had met the goal of 200 pledges of 12x12's! Which is a total of $28,000.00. When Hannah went back on the second time live we figured she duplicated that same figure. By the way ... a 12x12 is a donation of $12.00 a month for 12 months. The figure in the end is a whopping $148.00. I don't have any final numbers but I know she was responsible for bringing in pledges in excess of $55,000.00 ... PLUS the auction for the pooze!
She is totally amazing. She has always been so very special and I think it's because people see how genuine and compassionate this lovely little angel is. If you were one of the many that called in today and made a pledge in Hannah's name WE thank you from the bottom of our heart!!!
I hope you will all continue to pray for Hannah this next week ... this will be her worst time.
Thank you ... Love, Cindi
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