Elizabeth 89
September 12, 2005
Elizabeth is doing spectacular!  She had her last radiation treatment on Friday.  She still walks in and takes of her shoe, and holds her foot up.  Her new words this last week were ‘prap’ which means crap, she also says poop.  While playing with Noah at home last weekend, his cars kept running off of the coffee table and she picked up on the new words, of course everyone thinks that is funny!  When she was in for her radiation treatment one day last week, the medication that puts her to sleep was put in slower than usual.  She was slowly going to sleep and was saying “Oooohhhhh prrrraaaap”  Ooooohhhh poooooopppp” and of course the radiation staff thought that was hilarious, as do I!

Shannon took her to Stride Rite to get some good shoes for her to support her when she is walking.  Todd and Shannon both thought that some shoes with the lights in them would make her want to walk more, and they were right.  She walked around most of the time when we saw her on Sunday looking down at the lights on her shoes as she walked.

When Shannon had Elizabeth in the shoe store she told the clerk helping her that they wanted to get the shoes to encourage her to walk more.  The clerk asked how old Elizabeth was.  When Shannon told her that she was 22 months old, the clerk put per hand on Shannon’s shoulder and told her she needed to take her to a doctor because she should be walking good by now.  Shannon said “Look at her.  She is sick, and has been fighting cancer.  She is getting better.  She was walking at 14 months, then she got sick.” After taking in her baldhead and her dressing showing out of her sundress, the clerk was very apologetic.

You know that when you see people in wheelchairs, or with bald heads you want to stare or look away quickly because they are different and you may get caught looking at them, and then what should you do?  You should talk to them and greet them as you would any other person.

Elizabeth will return this week for a final (we hope) round of tests.  Her schedule will be as follows:

Monday, September 12, 2005 (day 68) she will have a bone scan and a bone marrow biopsy.  She will be put to sleep for this procedure.
Tuesday, September 13 (day 69) she will have a cardiac echocardiogram.  She will have the dye infused into her central line for the bone scan (MIBG) specific to neuroblastoma on Wednesday.  She will also have an oxygen test and some other labs drawn.
Wednesday, September 14 (day 70) she will have a cat scan of her chest, abdomen and pelvis.  She will also have the bone scan described above.
Thursday, nothing is scheduled.
Friday, September 16, (day 72) she will have an MRI of her total spine.  They will also find out if Elizabeth will participate in the study described in an earlier update.  If she will be in it, I will again give a detailed description sometime in the near future.
On Friday, September 23 she will return to the clinic for a checkup, but as outpatient only.

Late note:

I was working on this update earlier on Monday, September 12, 2005.  Todd called this morning to report that while Shannon was driving Elizabeth to Riley for the week of tests, she fell asleep at the wheel of the van.  They are both fine, Shannon has a scrape on her head but is feeling fine.  She had worked 11pm-7am shift this weekend Friday night and Saturday night, and didn’t get much sleep.  She fell asleep at the wheel and went off of the road and hit a telephone pole.  Again, they are fine, but the van is not.  She woke up after she was off of the road and had the presence of mind not to try to turn the wheel sharply to get back on the road, as she probably would have flipped the van.  Todd happened to be close behind her, probably less than a minute and was there to get Elizabeth out of the van before Shannon even got over to her.  She said that Elizabeth was yelling some gibberish at her while they were off the road!  Harold will be taking them down to Riley tomorrow for the tests, and the one’s that were scheduled for today will be scheduled for Thursday if all goes well and they can be fit into the schedule.

Thank God for no injuries in the accident, and Elizabeth’s good health.

Kathy

Elizabeth 88
September 5, 2005
Elizabeth is doing well after having a new central line placed on Friday, September 2.  She was well enough to come home on Saturday morning and spend the long holiday weekend with her family.  She bounced back after her sickness last week and is doing very well.

She was kept NPO (nothing to eat or drink by mouth) on Thursday, September 1, because the arrangements were that she would be on the surgery schedule “to follow” which means that she was an add-on to the regular schedule.  Since she was starting to feel better, she was asking for food and drink occasionally, but Shannon was able to distract her.  There were many people involved that wanted the surgery to be done on Thursday because she is sedated everyday for the radiation treatment, and the Nurse Practitioner involved with her case was concerned that Elizabeth would have to endure two rounds of general anesthesia in the same day if the line was placed on Friday, the same day that they were resuming the radiation treatments.

As far as Shannon knew, they were waiting for the last surgery to be nearly over before they came to get Elizabeth.  By 6 pm she was very frustrated and went to the surgery department herself.  When she asked the scheduler when Elizabeth would be coming down for her central line replacement, she was told that Elizabeth was not on the schedule for today, but was on for tomorrow.  Apparently the surgeon had changed her mind, but didn’t bother to tell the floor nurses so they could tell Shannon.  She was a little upset, to say the least.

The next morning Elizabeth went at 8am for her radiation treatment as scheduled.  Although she had been sick and was weak, she still wanted to walk in through the doors when they arrived.  She took off her shoe and put her foot up for the oxygen monitor to be put on.  She doesn’t cry at all there, and entertains the staff in the radiation department.

At 10:30 the same morning, she was again put to sleep and a new central line was placed.  It took a little while because they placed it in a different area in her large blood vessel in her chest, but used the same exit in her skin, so it had to be threaded a little bit.  She was fine, but groggy after the procedure.  Shannon and Elizabeth were waiting in her room up in the stem cell unit, and Elizabeth slept most of the day.

If you have been keeping up on the progress of Elizabeth from the beginning, you may remember the surgeon that was so rude on March 25 when her first central line was repaired.  At that time I reported that the surgeon was obviously not used to taking care of patients that are awake, because she kept saying “why is she crying?” “doesn’t she know I’m just trying to help her?” in a rude, no nonsense tone.

This is not the surgeon that placed the central line this time, but she did come in to assess Elizabeth after this placement.  She had, as always, several residents with her.  When she strode into the room, she glanced sideways at Elizabeth resting peacefully in the crib and said “she looks to me like she survived.  So, what was the big deal with her schedule yesterday?”  Shannon told her that the problem was Elizabeth was NPO all day and no one bothered to call and say the procedure was canceled for Thursday.  The surgeon said in a sassy tone “Oh, I guess that you expected me to drop my scalpel and pick up the phone to call you?”

Now Shannon had just had a call from the guidance counselor at Hannah and Noah’s school.  She was not in the mood to take any crap … especially when it came to one of her babies.  Shannon stood up and got in the surgeons face and said “Excuse me?!  I am not one of your surgical nurses, you work for me.  You don’t need to be so rude all of the time!”  The surgeons jaw hit the ground at that point, I’m sure that she is not used to mom’s talking to her that way.  One of the residents snickered, and I’m sure he/she got in trouble later.  At this point, the surgeon looked over at Elizabeth again and said “she looks ok to me.  I don’t think she needs to be assessed” and walked out of Elizabeth’s room, with all of the residents in tow.  This is a big no-no, and one of the nurses asked Shannon if the Dr. assessed Elizabeth.  When she learned that the surgeon didn’t, she immediately ‘wrote her up’.

Elizabeth was getting one more dose of IV antibiotics that night at 10:30, so she and Shannon stayed the night and came home early the next morning.

Prayers for the continued good health of Elizabeth and for the surgeon that needs some soul-searching help.

Kathy

Elizabeth 77
July 27, 2005
Today is another day of celebration!!  Elizabeth was dismissed from the hospital on Monday to the Ronald McDonald house, which is two blocks from the hospital.

Grandma Norma stayed with Elizabeth on Friday night and had a delightful time! Shannon and Todd went to Noah’s camp to pick him up on the last day (Friday) and to see what he has been doing all week. He was at a farm and got to experience many wonderful things, including a drink of fresh goat’s milk (Noah said it was yuck!).

On Saturday Todd, Shannon and Noah went to Camp Whitley to pick up Hannah and watch the awards presentation there. Hannah came home with ten ribbons including the Spirit Award….she made some new friends and had a wonderful week! Todd went to Riley after that for the remainder of the weekend and Elizabeth was doing some speedy recovery over those few days.

She changed from a sick child lying in bed most of the time to a playful, laughing, happy little girl. Shannon reported today that she is eating, drinking, and is off of the IV pain medicine, but still gets a little bit of morphine by mouth as needed, but she hasn’t needed much. She went to the doctor at the outpatient clinic at Riley today, and the doctors are very pleased and pleasantly surprised at her progress. She is at least three weeks ahead of where they expected her to be in this part of her treatment. Her blood counts were good today and she didn’t need any transfusions. She will be checked again on Friday. If she is doing this well when she goes back for a check up on Monday, she may be able to come home!!!!!!!

Hannah and Noah spent a couple of days with Shannon and Elizabeth at the Ronald McDonald house and Shannon said they have done nothing but party for the entire time. Elizabeth is eating, drinking, playing, and walking! She was so weak the last time that I saw her, I thought that she would need more time to build up her muscles, but she proved me wrong…again! She needs to wear a mask when she is out of their room. She does not mind it at all, and is rather proud of it. She saw many children in the hospital with masks on, but she did not have to wear one until now. Shannon said that sometimes when they gat back to the room she does not want to take the mask off. I’m sure it comes off when it is time to stick her thumb in her mouth, however.

Elizabeth had another birthday last Friday, she was 21 months old on July 22. We are so looking forward to her 2^nd birthday….and her 3^rd, 4^th, 5^th, etc.

Prayers for continued healing and no more cancer for Elizabeth!

Kathy

Elizabeth 76
July 20, 2005
Today is day 12.  Elizabeth has made some great improvements.  Her AGC was 78 on July 17, over 300 on July 18, and over 1200 yesterday, July 19, and over 3000 today!  This is terrific news!  Her body is fighting back very hard!

She still isn’t eating anything and is still on quite a bit of pain medicine, but is doing exceptionally well.  She had a black stool (usually indicating blood in the bowels) on July 18, but her red blood cell count has remained at a good level, so she is just being watched for now.  They don’t really think that she has a bleeding problem in her bowels; the blood is probably from the ulcerations that have erupted in her mouth and her GI tract.

The swelling in her mouth and her face has gone down some.  She is more active and is talking and playing more.  She did have some platelets earlier this week, but that usually makes her feel better.

I took a trip to Riley today.  I just had to see her and Shannon.  As soon as I walked in Shannon said to Elizabeth “Look who’s here!”  Elizabeth looked at me as she was sitting up in bed while Shannon was reading a book to her and said “Hi, Gamma.  Where’s Gampa?”

She is doing sooooo much better I can’t believe it!  She was so sick a week ago and now is social and playful.  Of course, she is still in isolation and can’t leave her room.  She is still very weak.  When I hold her she can hold herself up without a problem, but she seems to be a little unsteady.  Physical Therapy is coming in and checking on her each day, but Shannon does the therapy.

She is still on the IV pain medicine, but the dosage is being weaned down.  She could possibly get dismissed to the Ronald McDonald house on Monday!  Her blood counts are obviously going to be fine, but she still needs to be able to eat and be off of the IV pain medicine.  She did vomit one time while I was there, but this is becoming very rare.  Shannon said she thought that she had not vomited since last week.

I will attach a photo that I took today, so you can look at her while you say a prayer for her. I blew my nose while I was there with her, so she wanted to blow her nose, too.  It took several tissues, but she thinks she finally got her nose clean!  The nurses all spoil her as badly as we do.  The nurse came in to take her temperature, and it was obvious that keeping the thermometer for a while rewards her.  She took Shannon’s temperature while she was playing nurse!

Kathy

Elizabeth 74
July 16, 2005
Elizabeth is still very restless.  She does have quite a bit of pain (remember that the chemo causes bone pain).  The pain medicine is helping to keep the pain under control a little better, but it makes her drowsy and unsteady when she is sitting.  She appears to have some swelling all over, especially in her face.  Her cheeks are puffy, most likely due to the sores in her mouth.  When she smiles (we did see a couple of smiles today) it almost looks like a grimace because the corners of her lips can’t go up due to her fat cheeks, but when you see her, you know it is a smile!

She is getting a diuretic every day to help keep her from getting overloaded with fluids and to help keep her kidneys functioning well (and they are).  She is still getting some antibiotics, but her blood cultures have been negative (that’s good) and she has not had a fever for over twenty-four hours.  She has not eaten anything for quite a few days, but she is not starving.  She gets plenty of nutrition through her central line.  Her weight has gone up from 10.3 kg or 22.7 pounds when she was admitted on June 27 to 10.8 kg or 23.8 pounds today.  Her white blood cell count is less than 200, but it looks like it is going to go up very soon because today her monocytes (immature cells) were 60%.  Her nurse today, Linda, said that means that the white blood cell count will be showing up very soon.

I know that all of that is too detailed for most of you, but there are some reading this that actually eat all of that medical terminology up!  Elizabeth does not like to sleep lying down, for some reason.  When we got there today, she was sound asleep with pillows stacked all around her, sitting up in bed.  She looked so uncomfortable because her head was down on her chest, but Todd said that any time she is like that and they try to move her, she wakes up and she is mad!  She will sleep lying on Todd or Shannon, but that is all.  She did sleep while I was holding her today, but that was not a real sound sleep.  We have tried to figure out why she wants to sit up.  Does she have a headache?  Is she scared?  Does she have a lot of other pain?  Does she have nightmares?  We have ruled out all of those things and have pretty much determined that it is just because that is what she wants to do.  Remember when I talked about her being so strong willed and a fighter?

The day that Elizabeth got her stem cell transplant Noah was there.  He actually got to help by pushing in some of the cells with his Mom.  He is a pretty articulate talker, and at 6 years old you don’t always know what is going to come out of his mouth.  There were many people in the room during the stem cell transplant, so there was a lot of talking going on.  One of the doctors in the room asked Noah what he wants to do when he grows up.  He thought for a brief minute, and then he said that he would like to be a crash up derby car driver, a nurse, or a rock star.  This amused the doctor.  He asked Noah what instrument he would play and his instant response was “the electric guitar.”  Doctor asked if he knew any guitar players and said, with a slight tone like ‘you’ve got to be kidding’, “Jimmy Hendricks”.  This cracked up the whole room, but Noah didn’t know what was so funny.  He meant it because he thinks Jimmy is the best guitar player ever.

FYI, Hannah was at the hospital and participated in Elizabeth’s birth, and Noah was there and participated in the life saving stem cell transplant.

Elizabeth is a little better. She is sucking her thumb again and is more interested in what is going on when she is awake.  She is not playing with any of her toys right now, but I did see her looking around her bed a little bit today, just to make sure they were all there.  She always has to have her blankets.  There are now three that have to be within touching distance, or touching her somewhere on her body at all times.  Even when she is getting a bath or bandage change, she wants to be covered with her blankets.

She has a wave that she does with her right hand.  She holds her hand up and flaps the fingers down and looks at whomever she is waving to in the face.  She sometimes just keeps going around the room waving and says “Hi Gamma” or “Hi Gampa” or “Hi Daddy” or Hi Mama” and expects a response.  She will keep saying it and looking at you until you respond.  Sometimes when you wave and say Hi, she will then wave to your other hand.  Then, you get to wave with your other hand and say “Hi”.  It is her way of acknowledging that you are there, and I like to think, that she is glad you are there.

I am including a couple of pictures that I took today.  In one she is sucking her thumb while she is sitting up in bed.  She didn’t close her eyes from the flash; she was sitting there sucking her thumb with her eyes closed.  The other picture is when she was laying on Todd’s chest.  Her little button nose looks red because it is peeling like sunburn.  Sometimes while she is sucking her thumb, she is scratching her nose with her finger on that hand.  She rubs her eyes quite a bit when she is awake and barely awake.  They are probably starting to peel in the next couple of days.

We pray for all of the sick children today.

Kathy

Elizabeth 73
July 15, 2005
Elizabeth is doing just a little better.  She is a little interested in her surroundings today and has watched a little bit of some of her movies.  Her face is still swollen, and her mouth is still sore, but not bleeding as bad.  She took a little drink of water today.  Her skin is starting to peel, as expected.  It has already peeled at her nose, and today she is rubbing her eyes, her skin is starting to peel on her eyelids.

Shannon came home today after Todd relieved her at Elizabeth’s bedside.  Shannon will work tonight, and then get Hannah and Noah ready for camp.  The kids are excited about that!  I can’t even imagine how exhausted she must be, and still keeps going.  Someday she will wonder how she did it all, too!

Harold and I are going to go to Riley tomorrow to see Elizabeth and Todd.  We probably won’t be staying long, but will be there for moral support, and maybe some errand running.

I will give a good update tomorrow when we return from there.

We are accepting, in Elizabeth’s name, prayers of all types.  Be creative.

Kathy

Elizabeth 71
July 13, 2005
Elizabeth is very sick today.  The new pain medicine has been helping, but around 4 PM today the pain and sickness overloaded her and the pain medicine wasn’t touching her.  For a few hours Elizabeth could not be satisfied, and was absolutely miserable.

Later in the evening, she seemed to settle down a little.  She still cannot go to sleep completely, but at least she is not crying and trying to get comfortable.  She still puts her thumb in her mouth, but she has bleeding sores in her mouth now and doesn’t really suck her thumb.  Of course she isn’t eating anything, but she is getting plenty of IV fluids.

Her blood pressure was very high this morning, as high as 157/92.  She was not holding fluids (overloading her body with fluids, this can happen very quickly in small children) but was not urinating very much.  She was given Lasix, a diuretic (a medicine designed to make your kidneys work overtime to unload fluids and waste products).  Her blood pressure did go down after that.

Her blood counts were also low, so she had a transfusion of packed red blood cells today in addition to everything else going on (when blood products are given, vital signs including blood pressure {which she doesn’t like and must really hurt her now} are monitored very frequently).

Of course the physical therapy team is not coming to see her right now.  She is not sitting up in bed at all; she is only lying in bed or on Shannon’s lap.

Shannon’s mother, Norma, and her sister, Shelby, traveled to Riley to see Elizabeth and Shannon today.  It is as necessary for Shannon to see familiar faces as it is for Grandma and Aunt Shelby to see Shannon and to see Elizabeth.

We ask all of you to send up and extra prayer tonight for the rapid healing of Elizabeth’s pain and suffering so that she can move on to the final healing process in this devastating illness.  Please pray for Todd and Shannon to have some extra strength and be strong for each other and for Elizabeth.

Kathleen

Elizabeth 70
July 12, 2005
Elizabeth was very ill last night.  She has been on a morphine pump for her pain as was described in an earlier update.  She has been having some allergic reaction to the morphine in the form of a fine rash, but it has been controlled with the Benadryl for the most part.  Last night she because more and more restless and fussy. It was actually more than ‘fussy’.  She was crying and restless.  She would lie down for only a short while, sometimes as little as 10 seconds, then sit back up in bed crying.  There was nothing that could make her settle down.  They even tried Ativan, and that did not do anything for her except possibly make her more restless and fidgety.

Finally, the morphine was stopped and another pain medicine, Dilaudid, was started on a pump in place of the morphine.  After about ½ hour of more pain and screaming or rather crying with some “no! No! NO!” thrown in while she is flopping around in the bed and on Shannon, she settled down.  She went to sleep, finally, around 3 AM.  Shannon and Elizabeth did get some sleep during the day, also.

She is still just as sick, however.  She is still running a fever at times, still having some dry heaves, still has a sore mouth, and still has sores in her diaper area, but is as least more comfortable.  Hopefully, they will get a better night’s rest tonight.

Hannah had also spent the night.  She was pretty upset most of the night, not because she couldn’t sleep, but because her sister was so sick.  She has not seen her like this.  She finally got some sleep out in the family waiting area on the fifth floor, but was ready to go home by the time Grandpa Clark got there to pick her up today.

Next week she is going to Camp Whitley for the week, and she can’t wait!  That should be fun for her.  Noah will also be going to camp that week; he will be in a camp at a farm from 8 AM until 4 PM.  He will have a blast!  It will be a good break for both of them.

I am attaching a picture of Shannon and Elizabeth from a recent day at the Fort Wayne Children’s Zoo.  We are all looking forward to the day when she can go again, with hair and without a central line!

Prayers for Elizabeth, Hannah, Noah, Todd, Shannon, nursing staff at Riley.

Kathy

Elizabeth 68
July 10, 2005
STEM CELL: A single cell that can regenerate and turn itself into one of several types of specialized cells.  Some primary sources: embryos, adult tissues and umbilical-cord blood.

This is directly from an article in the Parade Magazine today.  It was an interesting article, but because we are so involved in the process of a stem cell transplant with Elizabeth, I found it interesting that the source of her stem cells was not even given an honorable mention (autologous, or from her own blood).  She is not an unusual case, at least not at Riley.  This is routine treatment for some children cancer treatments, especially Neuroblastoma. 

I have had some people ask me to explain what a stem cell is, and I found the description simple in one sentence in this article.  The cancer cells are gone in Elizabeth, or at least they are not showing themselves at this time, so the purpose of the chemo treatment now is to wipe out all existing productive cells.  The stem cells are now swimming around, checking out their new permanent home, and will soon start to reproduce exactly what Elizabeth needs.

Kathy

Elizabeth 63
July 1, 2005
Elizabeth started the stem cell process yesterday afternoon (June 30).  Please refer to update 55 for any questions regarding the entire process.  She started chemo yesterday and had a problem with low blood pressure during the night last night.  She has had borderline high blood pressure since she was first diagnosed, so for her to have “low” blood pressure could mean an extreme sudden change, and could make her ill or even be severe enough to stop the process of the chemo.  They were, however, able to get it under control and it has been stable since then.

She has been doing pretty well today.  She ate a couple of times, which is good for her during chemo treatments.  The environment in the stem cell unit is much more restricted.  Not only does everything need to be scrubbed and re-scrubbed with bleach, visitors are severely restricted also.

Anyone that plans to visit Elizabeth in the hospital must call ahead first to make sure it is OK. There can only be one visitor in the room at a time with one of the parents, and that is only for 15 minutes.  This is much different than on the other side of the same floor where she has been before.  On the other hand, this is a treatment that she has never had before and will save her life, so we will do as asked.

Todd has had Herpes Zoster, or shingles in one area on his forehead since he was 2 years old.  He occasionally has an outbreak and treats it with medication.  It only pops up if he is in the sun too long, has a fever, or gets stressed.  You can only guess how many outbreaks he has had since January 2 of this year.  He has another outbreak so is not allowed to stay with Elizabeth with an open lesion.  Shannon will not be able to work this weekend because she needs to stay with Elizabeth.  Oh yea, and their van broke down this week after Shannon took Elizabeth to Riley and Todd was driving it to work.  Just another crazy day, huh?!

Hannah and Noah will be having fun, however.  They are with Pete and Norma at Brown County State Park riding their horses.  They love to do that!

Say an extra prayer for Elizabeth and family as they start the stem cell process.

Kathy 

Elizabeth 61
June 22, 2005
Happy Birthday Elizabeth!  She is 20 months old today (and has been through more than most 20 year old girls!).  Today is also her Mommy’s birthday!  Happy Birthday Shannon!  Last week was her Daddy’s birthday!  Happy Birthday Todd!

Todd and Shannon had a meeting at Riley yesterday with the doctor who is over the stem cell team and a nurse practitioner, Kathleen (nice name).  The meeting wasn’t all that long, but necessary.  Todd and Shannon had to be informed of the risks and benefits of the treatment and then sign the consent for the treatment, just like any of us would have to do to have any procedure done.  They told Todd and Shannon that Elizabeth is an ideal candidate for the transplant because she is in such good health.  They were told that some children enter the stem cell portion of the treatment with active cancer in their bodies.  Elizabeth has a clean bill of health right now, making her chances much higher for total remission and her chances much less for re-occurrence and/or a new cancer developing.

Elizabeth has been through scores of tests and retests since my last update, all, and I mean ALL of the tests have been good!  She has no signs of active or dormant cancer in her at this time.  That does not mean, however, that some malignant cells are not hiding somewhere waiting to pop out, therefore, she must go ahead with the stem cell transplant.

As you recall from the update that was long and tedious in the explanation of the process of the stem cell process, she will probably get very ill once again, but hopefully for the last time.

Elizabeth has been a joy over the past couple of weeks.  Everyone has enjoyed her and has been re-acquainted with her joyfully spicy personality.  She has been talking up a storm, and wants to try everything and interact with everyone.  We can’t wait until she is back whole, healthy and happy.

She will begin the grueling process on June 29 at 11:00 am.  Keep all of them in your thoughts and prayers.  I am attaching some family photos from the past week, along with lots of happy memories.  One photo is of Hannah, Noah and Elizabeth just having fun on our porch swing, another is of the birthday cake for Todd and Shannon (we had to relight the candles several times so that Elizabeth could help blow the candles out), and one of the entire family.  If you look close, you will see that Noah and Elizabeth are saying cheese to each other!

Kathy

Elizabeth 58
June 6, 2005
Elizabeth is still at Riley. Harold and I went to see her yesterday.  She doesn’t seem quite as apprehensive as she used to be when anyone would walk into her room.  She actually seemed glad to see us, but at the same time clung to her Daddy as if he was going to leave.  I’m sure that is what she thought would happen, changing of the guards, so to speak, but after she believed that he was not leaving but we were staying, we had a great time.  She took her baby for a walk again (see attached picture).  She talked to people as she passed them in the hall, just like any proud mother would!  It was, however, the first time I have seen a Mommy suck her thumb while trying to take her baby for a walk!

She has not had a fever for a few days, and her cultures have all been negative (that is good) so far.  She has a runny nose (who doesn’t this time of year) but it is clear drainage and it doesn’t seem to bother her.  She was sitting in a wagon eating her lunch when we arrived.  Her new favorite food is corn (it was pizza for the last two weeks).  Todd said that as soon as she awoke on Saturday, she was asking for corn!  The menus are very flexible.  They can order whatever they want whenever they want it….so she had corn!  This flexibility makes sense since all of the kids on this floor are cancer patients of all ages, and sometimes they are nauseous or vomiting, but the next minute they could be fine.

There was an article in the Fort Wayne News Sentinel in the Features section on Monday, May 23 of this year.  At first, I was upset by it because there was a picture of a sweet little girl with a pink sweater on with a fur collar, hugging her teddy bear while she slept.  She was about 3 years old and had no hair.  I looked right away to see where she was from.  She was from New Jersey! Why was there an article about her in our paper when my own granddaughter is just as sick right here?!  Why should I care about her?

As I read the article, I understood why I should read it.  I learned some things (I’m not that old yet, that I can’t!).  The parents describe the moment that they first heard the word “cancer,” it was as though someone had turned down the volume.  The doctor’s mouth moved, but they didn’t hear him.  Now that sounded familiar.  On that day, the parents began a prolonged ordeal known only to those whose children face a potentially fatal illness.  Every year, 8,000 children are diagnosed with cancer.  It is a diagnosis that weighs heavily, often testing the underpinning of a marriage and family relationships.

It is all so unbelievable.  One day Elizabeth was having trouble moving her bowels, then all of a sudden she is lying in a bed in the intensive care unit at Riley with a new incision in the back of her neck and a big plastic tube in her chest for……what?  You’re kidding!  Our little Elizabeth is going to have chemo?  That is only for sick and dying people, not her!

Some days I still have a hard time just believing it, let alone accepting it.  Therefore, you cannot even imagine what Todd and Shannon are trying to cope with.  Sometimes their days are just tolerable, some days they have a hard time getting through it.

Some days it is difficult, I am sure, for Todd to get into his car and see his clients.  Some days it is difficult, I am sure, for Shannon to go to work and nurse others back to health.  Some days, I am sure, it is difficult for them to talk about anything except Elizabeth.  Some days it is difficult, I am sure, for them to say goodbye to Hannah and Noah to go sit with Elizabeth.  Some days it is difficult, I am sure, for them to say goodbye to Elizabeth to go see Hannah and Noah, not counting any time for them to be with each other.

Please include in your prayers for Elizabeth today some prayers for Todd, Shannon, Hannah and Noah.

Kathy

Elizabeth 55
May 27, 2005
Ok, folks, back to reality.  Todd and Shannon sat with the stem cell transplant team on Wednesday of this week.  After Elizabeth had been progressing so well, the facts of this potentially fatal illness came back to slap them, and therefore all of us, in the face.  I am giving you the facts as they received them and with some of the research done by Shannon while at Riley this week.  Hopefully, you will be able to see the entire picture of the treatment, goals, plans, and percentages of cure for this nasty thing.

With the exception of the original messages regarding Elizabeth’s illness, this has been, by far, the most difficult message to write.  This is pretty long and involved; so don’t go on if you only have a minute or two, print it off and save it for later.  It will take some contemplation to absorb.

What?
The very high dose of chemo destroys the bone marrow.  The stem cells are the base cell for most blood components.  The infusion of the cells “rescues” the patient from the toxic effects on the bone marrow.

Why?
A stem cell transplant allows for a much higher dose of chemo to be used to kill the cancer cells due to the rescue of the stem cells (Elizabeth’s were rescued a couple of months ago (remember the aphaeresis?).

Day –8 (minus 8, or 8 days before the stem cell transplant, which is day 0). Chemo treatment begins with Cerboplatin plus VP-16 (Etopside) plus Melphalan continuous IV infusion.
Day –7 the same
Day –6 the same
Day –5 Cerboplatin plus VP-16 only
Day –4 thru –1 no chemo, rest only
Day –0 Stem Cell transplant (the infusion only takes about 15 minutes)

Day 1 to ? (2-3 weeks) wait for engraftment.  Engraftment is defined as an absolute neutrophil (a type of blood cell) count of greater than 500 for 3 days.  Elizabeth will be discharged from the stem cell unit.

Discharge thru 2 weeks post discharge.
They will live at the Ronald McDonald House so Elizabeth can come in daily or every other day for labs and to probably receive blood products (transfusions).

At 4 weeks post discharge:
They will again stay at the Ronald McDonald house so Elizabeth can come in daily for 2 weeks to receive radiation.  More details of the plan for radiation will be determined at a later date.  Usually, they target primary tumor sites of which Elizabeth has 2 (spine and left adrenal gland in her abdomen).  These were both removed, but radiation is still part of the plan.  They need to weigh risks vs. benefits of radiating her spine.

Post radiation thru 6 months
Elizabeth will take orally retineic acid (a form of vitamin A), which works in the following way:

The progression of normal cells in our bodies is a definite progression, from immature cells to specialized mature cells.  Cancer cells, or stupid cells, are immature cells which do not become specialized.  They break away from their natural sequence and do not know how to do anything but reproduce.

The Retinoic acid somehow works to keep immature cells from getting out of sequence so that they do what they are supposed to do.  Elizabeth will take this medication by mouth for two weeks, then off for two weeks, alternating for a period of six months.

After Retinoic Acid
Elizabeth may be chosen to go on and antibody (GD2A).  This antibody works by attaching to any possible remaining Neuroblastoma cells.  When an antibody is attached to any cell, the body’s natural immune system can destroy it.

Day 0 thru day 90
By day 90 Elizabeth should have made her b-cells again.  These cells are a specialized part of the immune system.

Day 0 thru day 180
By day 180 Elizabeth should have made her T-cells which are the final component of her immune system to be restored.  At this time she MAY be able to live a somewhat normal life.

Day 100
Her central line comes out!

During transplant
Visitors will be limited to 2 at a time.  If you or anyone in your home has any illness you should not visit Elizabeth.  Any toys brought should either be new in a package or able to be washed with bleach water.  Elizabeth will not be able to eat any food from a restaurant.  She may not have fresh fruits and vegetables, or anything cultured (i.e. Yogurt, cheese) or undercooked meats including hot dogs, some lunchmeats or anything that has not been pasteurized.

After Transplant
For approximately nine months, Elizabeth will have to live by the above rules and regulations.  During this time she will still be at a very high risk for developing any infections.  After one full year post transplant, she will need to have all of her childhood immunizations again.  Due to the transplant, which basically gives her a brand new immune system, any immunities that she may have developed before will be gone and she will have to start over.

Check-ups
For at least six months, Elizabeth will have blood work done probably two times a week to check for any low blood counts.  She will be seen at Riley weekly, them monthly, then every other month, then every six months, and finally annually.  This will continue for an indeterminate amount of time.

There is a 60% chance that Elizabeth will not have any recurrence of the Neuroblastoma.

Risks during transplant