On Thursday, July 19, 2001, Sam was diagnosed with t-cell Acute Lymphocytic Lukemia (ALL). Early the next evening, she had surgery to implant a special catheter in her chest that will serve as the access to her blood for testing and IV medications. She immediately received her 1st dose of chemo and radiation. The next few days were touch and go because the leukemia had already caused her liver and spleen to swell and fluid accumulated around her lungs. They removed over 800cc of fluid from around her lungs. What a trooper this little angel was with all the poking and proding, the x-rays, spinal taps, medicines and oxygen. They had to put the IV back in after a surgery because her port-a-cath was not working. She struggled for days just to breathe.
And then on Tuesday, July 24, 2001, Nancy and Ken got the news that she had a RARE form of leukemia. Her chromosome pattern was similar to Acute Mylegenous Leukemia (AML) and on top of that, she has the even RARER Philadelphia chromosome. Her prognosis went from 80% treatable/curable to no where near that. Her form of leukemia is recurrent, meaning she can get into remission, but the leukemia will most likely recur. Her only hope is a bone marrow transplant (or stem cell transplant from cord blood). The next day, her 3-year old brother (Matthew) along with Nancy and Ken were tested as possible bone marrow donors.
After several rough days, Sam was able to go home on Friday night, July 27, 2001. What a great night home it was to have the family together for the 1st time in 9 days. What a welcome the neighbood gave her. There were purple balloons on every mailbox and chalk rainbows painted in every driveway. All her friends were on the street corner with signs and banners while cheering for her. It certainly was overwhelming for Nancy and Ken. Sam thought it was a parade. The next day, she developed a fever and by the evening was back in the hospital. Things went downhill from there. She became neutropenic. The next 6 days were spent in the hospital trying to get the fever down. The pain level is being managed with morphine. The mouth sores are bad. She has needed several blood transfusions and platelets.
And now for the good news.... Aug. 3, 2001. Samantha had another bone marrow biopsy and spinal tap today. Nancy & Ken are jumping for joy ! There are no leukemia cells and there are signs of her new cell generation. The blood counts are improving too. However, the Philadelphia chromosome is still in the blood. That is not good because that's the RARE part of this is nearly untreatable. Also, for the 1st time in a 6+ days, the fever broke. The mouth sores were so bad that she was not able to eat for about 5 days ! So, finally, Sam is home again on about day 22. She will be back in the hospital on Aug 10 for her BIG blast of chemo and radiation. From here, we take things one day at a time, praying for a miracle to get a marrow or cord match.
Sat, Aug 11, 2001:
Sam was supposed to get her BIG blast of chemo starting yesterday for 4 days. They went to check in and did some bloodwork first. Sam bravely told me today "I got to go home because of the finger prick. It only hurt for just a second and not even a minute". What a trooper this little one is ! The reality is that her frail little body cannot quite handle any more chemo now. All her sores need to heal a little. Nancy and Sam slept until 10 am ! I brought Matt home and as we pulled in the driveway, he giggled and said "Yay, we get to be a family again !".
Sam has lost a LOT of weight, but will have to start back on Monday with the chemo. In the meantime, she has to take 18 pills per day !!! And other liquid medicines.
We should all reflect for a moment, count our blessings and pray for Sam and Nancy & Ken ! They are going through what no one could imagine. But at least I saw some smiles today !
And by the way, Sam counted the pencils in her collection and she has 70 now. I informed her that I still have more than she has (although somehow mine dwindles as hers grows).
Mon. Aug 13:
After a nice weekend home, eating pancakes, grapes, cream cheese and lemonade (actually gaterade), Sam is back in the hospital for her big 4-day "blast" of chemo. Unfortunately, her port-a-cath is not working so they may have to start an IV. She had another spinal tap and bone marrow biopsy today. The first miracle is official: Sam is in REMISSION !!!!! She has no leukemia blasts (new leukemia cells) and she has successfully completed the induction phase of her treatment. She now goes into the consolidation phase. Now, we WAIT for a match.
But, Sam will get much worse physically with this big blast, so please pray for Sam's comfort.
I must share some conversations Sam and Matt had the other day on the way home from the hospital. This is how Nancy recorded the conversation (both kids in their car seats really packed in tight with all the goodies, balloons and gifts):
Matt: Are you all better Sam ?
Sam: Well, I think I have no more leukemia, but I know I still feel sick.
Matt: Will I get leukemia Sam ?
Sam: I hope not Matt. I better not get too close to you or touch anything of yours.
Matt: Ok Sam. I sure hope you are better soon.
There was actually so much more. How grown up these little ones (ages 4 and 3) are suddenly !
Tues. Aug 14:
Sam started her big blast of chemo yesterday. After the bad news of the complications with her port-a-cath (cathater surgically implanted to give easy access for give IV's and taking blood), the AWESOME news was received that Sam is in early remission ! She still gets chemo until a match is found though. Bless her little heart, she is so sick from the chemo and she is so down about being back in the hospital. The worst is yet to come by the end of the week.
What a successful miraculous bone marrow drive we had in Salisbury, NC at Sacred Heart Church (and thanks so very much to Sacred Heart, the Red Cross, the Hendrick Marrow Program for funding a good bit of it and for those who helped us in raising over $10,000 (to pay for the cost of marrow testing of $73 per person) within 6 hours ! We successfully had the drive that cost $43,800 funded entirely - THANKS. We tested 600 folks, and actually turned away 200+ when the Red Cross ran out of supplies and we ran out of time.
Thur. Aug 16:
Sam really had a good day today. When I spoke with Nancy this morning, Sam was in the background saying "Mommy, we are wasting some good playtime". She is getting some "rescue drugs" to help get rid of some of the chemo drugs that are staying too long in her system. Her lips, throat and stomach are getting bad again (from the chemo killing all her cells).
Now for the greatest conversation I had with Sam for about 20 minutes tonight. She told me that Snow White came to visit her today and she got her picture taken and already has it. (Thanks Rip !) And she said she got to see some "real baseball players". They gave her a poster and she cannot wait to share it with Matt. She explained that her mode of transportation to the playroom is Alice. Alice is her IV pole. Alice has a hat, a necklace, an adult and child rosary and a bead necklace that her special 12-year old friend Michael (whom she met at the hospital) made for her.
Sam certainly was her jovial self today. She was upset though when the milk did not taste like milk. I sure wish someone would invent something that could counteract what the chemo does to the palate !
We thank God each day as we get each new day !
Update: Mon. Aug 20:
Sam went back to the hospital today to get blood levels checked. She is holding her own. Her red blood cell and platelet levels are borderline, so she may require blood and platelets tomorrow. Thanks to all who have donated blood and platelets too. A transplant patient will require 120+ units of donated platelets - so keep up the good job donating. Your HLA type will be in the computer for when she needs her transplant, so you may be called to donate more for her.
I added some more links (including a way to find donor centers for each state) and I added a hit counter to see how many hits I am getting on this site. Coming soon: some pictures of Sam riding Alice (the IV pole) in the hospital.
Update: FRI. Aug 17:
Sam had a pretty good day. Ken & Nancy were so hoping they would be going home. Sam, however, had to continue getting the rescue drugs to push some of the chemo drugs out. But, around 5 pm they finally went home again. I had such a wonderful 3 hr visit. I got to push Sam down the hall while she rode Alice the IV pole. Sam told me that Alice helps lots of kids. We played all kinds of games (I am not kidding, about 6 different games). We had to go back to the room to get detached (from the IV). Believe it or not, but the worse procedure for Sam is getting the tape off her skin. The poor kid cried. But then when she was "free", we went back down to the playroom so Ken & Nancy could pack up to go home. That was a 30 min. chore ! I got the tighest huges from Sam as I carried her down the hall.
Sam selected a pretty pink hat to wear home and got to ride her throne on wheels (the wheelchair).
Sam's immune system is headed toward rock bottom again though, so they could be back in the hospital at any time.
But, once again, Ken, Nancy, Sam and Matt are a family again. Thank you God !
Update: Thur pm Aug 23
Click Here For Special Announcement
Today is Sam's Aunt Kate's birthday ! Sam is really having a good day today. The doctor is amazed at how well she seems to be holding her own. Her mouth sores are still real bad. But, she can manage to eat a few bites here and there. Hopefully she will be up to the special unicorn birthday cake I am making her for this weekend. Yes, Sam will officially be the big 5 years old on Aug 26th.
Thanks to all who got tested at the "marrowthon" held around the state on NC today. Let's pray for a match.
I read something to Nancy today that sum's up their life now:
Job 3:25-26 What I feared has come upon me; What I dreaded has happened to me; I have no peace, no quietness; I have no rest but only turmoil.
Update: Wed. Aug 22:
Sam is holding her own daily. Yesterday, once again, she went back to the hospital and the finger prick said "Go home". Her white blood cell count is slowly dropping. She has not yet gone back to the hospital today for her blood level checks. So, by her birthday this weekend, she will probably be in isolation again. Her red blood cells and platelets are hovering right on the magic number of needing donor blood/platelets. Her lips have started bleeding a little more and it is hard for her to eat with the throat sores. Remember, the chemo does this as it kills the cells in her body. One can not imagine having to go through this !
Update: Sun pm Aug 26
Click Here For Special Announcement
What a fighter this little one is. Sam is gaining weight by the ounce and eating better. Today, she even ate her birthday cake. I made a cake with a unicorn and none other than Minnie Mouse riding the unicorn. Then there was a rainbow at the top. Every bit of the labor into it was well worth it ! Sam had a great day today. She chose a few games for her family party. One was the Dads against the kids in a Silly String fight. It was great. Everyone (including the lawn) was covered in silly string. Nancy cleverly had a contest to see who could pick up the most. The kids won. Next came the pie throwing contest. Ken was in the "booth" and Sam was up 1st. She ,however, chose to blow a kiss rather than to throw the whipped cream. Next up to the plate was 3-year old Matt. Being the boy he is, he never batted an eyelash at the idea of a whipped cream pie in Daddy's face. Sam was caught periodically licking some whipped cream. She tired quickly and retreated back into the house while everyone else celebrated her birthday outside. It is amazing to see a 5 year old so sick that birthday presents went unopened.
Sam goes back to the hospital to get her blood levels checked. Hopefully this will be a great week and she can gain stength. Starting next week, so goes back into the hospital for a round that will last from 1 to 4 weeks ! Let's hope she will continue the battle until she can find a stem cell match !
Update: Mon pm Aug 27
Please check out Sam's picture page. I have lots of updated pictures and changed the way I presented them to make them easier to view. The last ones are the newest.
Sam got to go home from the hospital today with the news that her blood numbers are looking good. There is 1 more expected week at home - then in for a 1 to 4 week stay. Her immune system is still bad, so she may not go out for any visits.
I ask that you please please please do not go visit the family if you are sick, have been sick or have been around ANYONE sick. The slightest little germ or virus will zap her back in the hospital and could be fatal !!!!!
Update: Tues Sept 3
Sam is in the hospital again today for 1-4 weeks depending on how she does. She will get the bone marrow biopsy, spinal tap, radiation thru the spine and chemo. A new chemo drug will be introduced. Ken said he thinks she did hit 30 lbs again finally.
Thanks to the folks who hosted, turned out and helped fund the Boone marrow drive. What a great success for a labor day Sunday morning !
Ken, Nancy, Sam and Matt had a great family time this past weekend. Sam put on a mask and they headed to Sam's favorite carousel ride. They disinfected the horse and what a great time they all had. I heard "Washko wept wearily again".
I have some more great pictures I will share within the week. And thanks to all who gave platelets this past week - Suzanne (FL), Cindy (TX), Grandpa L. (NC). Transplant patients will use 120+ units of platelets !
Update: Fri pm Aug 31
It is hard to believe that Samantha has battled leukemia for 6 weeks now ! How time flies.
Sorry I was a little slack on the updates this week. The fact is that Sam has had a rather stable week. The best thing that has happened is her appetite. The doctors warned Nancy & Ken about the middle of the night hungers. It is great to see her finally eating. I don't think she is over 30 lbs. yet though. She starts her next BIG blast of chemo again in a few days. What a cycle.
Nancy & Ken have spent quite a bit of time on the phone with the transplant team of doctors. They are getting ready for their grand tour. Sam is all excited because she went to Duke one time and remember it was near Raleigh where the NC state fair is. Sam and Matt are "planning" their ride on the rollercoaster. Little does Sam know what type of rollercoaster ride they are getting ready for. Nancy said it was such a cute conversation.
A special thanks to all the media in Boone who have been promoting the Boone Marrow Drive this Sunday at St.Elizabeth's. I just have the biggest fear that we will be turning folks away due to lack of funds.
And speaking of funds - please visit the new page I added called See Zerger Run
John Zerger of Salisbury is doing something very special to help fund bone marrow drives.
Aunt Cathy gave platelets again at the Charlotte platelet marathon. I even got a beanie platelet to give to Samanatha. Those folks at the Red Cross are great. They do all they can to make you comfortable. I kicked back my 2 hrs and 35 minutes and watched Apollo 13. Then my vien gave out with 6 minutes left. Well, at least I gave some platelets to help save a life. One day, I will catch up with all the emails and post the names of all the folks who have donated blood and platelets. To those who cannot due to health reasons - I say keep up the good prayers !
And speaking of running, wow, the Brenner Children's Classic had quite a turnout this year. What a wonderful job they do raising money for that children's hospital Sam is in !
In case you have not heard, Sam's now has over 600 pencils in her pencil collection. Her classmates have been quite busy helping her. Thanks.
By the way, if ANYONE would like to organize a bone marrow drive ANYWHERE in the US, please feel free to contact me for directions to get started. I have found that certain states are backed up in their Red Cross labs.
Update: Wed Sept 4
Sam made it thru her spinal tap, radiation in the spine, new chemo drug and bone marrow aspiration great. Nancy said she woke up from the anesthesia and went straight to the playroom - how amazing. She had a reaction to the medication used to help keep her comfortable, so things could get miserable the next few days. She is getting her high high dose of her major chemo drug today. They are looking at home again Saturday hopefully. Her immune system will begin plummeting, so once again, I ask that folks please please please do not go visit if you have been around ANY sickness. Thanks.
By the way, I have a golf tournament set up for Oct 13 in the NC mtns at Hawksnest. I should have the info posted within the next few days. If anyone is interested in helping me get some door prizes or finding tee/green sponsors - please email Cathy This tournament is to raise money to do more bone marrow drives.
Update: Fri almost midnight Sept 6
Sam is getting the rescue drugs to help get rid of some of the chemo drugs in her system now. They have to watch the drug levels real close. All the chemo that causes diarrhea is also burning the poor little one's butt. Her spirits are good. She spent 2 hours in the playroom at the hospital making felt dolls and dresses. Nancy said the distractions are helping with the pain tolerance.
I just updated the pictures, so visit that page. The birthday cake and the 2 ballerina pictures are bitmap instead of jpeg files, so they take a little while longer to load up.
NEWS FLASH ---- are you all ready for this. Still no exact match on the bone marrow ---- but Duke called today and they have found 2 donated umbilical cords that are a 4 out of 6 match ! This is GREAT news. They are still testing this cord blood to verify that it will work for her. Remember that with the stem cells in the bone marrow, you have to have a 6 out of 6 match on the antigens. But, with the stem cells in the cord blood, you only have to have a 4 out of 6. The cord blood is known to have a better graft vs. host (GVH) especially in children. Those stem cells have never had to go learn any bad patterns or fight any germs. Sam's blood type will actually change to the new blood type too. When I say stem cells, do not think negative here. This has NOTHING to do with the embryonic stem cells we are hearing in the news.
Anyhow, if the tests come out ok on the 2 cords, they will select the best. If they are suitable, then Samantha will have her transplant either in 3 weeks or 6 weeks. There is a LOT more to all this though. First, she must be strong enough and gain some more weight. Then she will have 2 weeks of major radiation and chemo. Ken & Nancy are preparing for the worst yet to come.
What does all this mean now - well, I keep pushing bone marrow drives in case this is not a reality. And, what if she rejects this ? I keep pushing for now.
If this was meant to be - it will be. Please keep Nancy, Ken, Sam and Matt in your prayers.
Who donated this past week ? Mandy and Mary donated platelets. Thanks. The average transplant patient will need 120 units of platelets. (One unit = 14 donors too)
Please also visit the page of the golf tournament. As I said, I will not stop until I have to ! Aunt Chris, are you really going to play golf ? The sport will never be the same.
Update: Mon Sept 17
Samanatha is holding her own. She is asking a lot more questions, is very sensative toward her medical condition and knows that leukemia is a kind of cancer. We toured the Duke transplant facility. What a great program they have. Sam will go for 1 more round of chemo the end of this week. Then they will get her body ready for the transplant. Please pray for this miracle to happen. Also, remember to keep the blood and platelets flowing for the Red Cross. This gift of life is for MANY ! Thanks.
Update Tues: Sept 11
Sam got to go home from the hospital Saturday afternoon after passing the blood tests. She loves going home but dreads the "detachment" process. The needle from the port-a-cath has to come out after the real sticky dressing is removed. Her appetite is unfortunately once again dwindling as the chemo is burning her lips and throat.
Update: Wed: Sept 12
Sam was so brave yesterday getting her chemo shot in the thigh. She and Matt then entertained some doctors with Sam playing the piano and Matt dancing around.
There cannot be a rainbow without a storm. Sam always wanted to see a real rainbow and her wish came true the other day when they had a rainbow that ended right in their back yard. Matt got out and danced in it (getting soaked of course) and Sam took pictures.
Update: Thurs Sept 13
We are going to Duke tomorrow to visit the transplant team, work out the financial details and decide when to do what. Folks, please keeping donating platelets. The Red Cross has been calling those who have donated platelets or filled out that platelet interest form at a marrow drive. The folks in the recent tragedies will be using LOTS of platelets and Sam will be needing LOTS of platelets. Thanks so much !
Update Sun: Sept 30
I added some pictures, check them out.
Sam is holding her own. I think this week is her last round of chemo before the total body radiation. The affects of the chemo from last week should be hitting hard this week. That is not stopping her from what she loves best to do... READ. She is now reading 1st-2nd grade books on her own ! Not bad for a 5 year old who was SUPPOSED to start kindergarden. Good job Nancy and Ken.
Update Wed: Oct 3
Sam was real brave once again getting accessed and de-accessed for chemo yesterday. Her blood counts are dropping and are LOW now. She is holding her own and just being a little girl for now.
Check out the great article from the Salisbury Post Click Here
Good Luck to John Zerger who will run 24 hrs for Sam this weekend. As Nancy said, they will keep looking for that perfect match right up til the transplant ! Go John !
Update Fri: Oct 5It's back to the clinic today (of course dressed as Snow White). Sam's numbers are low, so once again, I ask that folks are careful not to be around any of the family members if you have been around anyone sick. Some of the affects of all this chemo are hitting that little body good now. Did you know that fingernails can come off just like hair ?
It looks like the surgery to get the central line put in will be in about a week and a half. If she gains a little more weight, it will hopefully be just 1 surgery.
Good luck running 24 hrs for Sam John !!!
Update Mon: Oct 8
Sam is really doing better now. Although her numbers show she should be real bad, wow is she full of energy. She goes from one activity/game into another. And wow is that little mind quick. She was adding and subtracting in a game quicker than Aunt Cathy - no kidding !!! She even showed me how she can take even the yucky medicine all by herself now. And a spoonful of mini M&M's sure can help the medicine go down. Hopefully her dentist does not mind !
Tomorrow, she will be getting the "mold" of her body which will be used I guess for the total body radiation. So, that visit to the clinic will be LONG. I am sure she will go as Snow White again too. This all means the transplant will be within the next 30 days.
Update Wed: Oct 10
Sam is quite a brave little girl. She spent about 6 hrs at the hospital yesterday with all kinds of pre-transplant tests. She certainly has the technicians wrapped around her fingers too. Thanks so very much to all the medical folks for taking the extra special steps to help the kids. When it came time for chemo, she was ready to just get it and get out. She kept saying "Can I just please get my chemo". One little 6 year old said "Hey - give her mine too". She met a new friend who recently had a transplant. Please say special prays for little Grace too.
Sam has announced yesterday she is going to be a nurse when she grows up. Not just any old nurse she said - but "one that works in a hospital and makes children happy".
It looks now like the surgery for the central line will be Oct 22, start radiation on Oct 29th, chemo on Nov 9 and official day 0 for transplant somewhere around Nov 12 or 13. Hold your breathe for a minute and things may change !
The Hope For Marrow golf tournament is set for this Sat at Hawksnest just outside of Boone. There are slots open and it is peak leaf season. Bring along a camera. Please don't run over any whoolly worms as the whooly worm festival is the following weekend !
Thanks so so so so much to Kraft for the Blues Clues macaroni and cheese. Sam is up to 35 pounds. Yay !
Update Sun: Oct 14
There is so much to report. The Golf Tournament was a success, despite the cold, windy, rainy day. Thanks to all the sponsors, Hawksnest and the players. Thanks to Ken's sister Peggy and my sisters Chris and Kate for ALL the help.
Sam fulfilled one of her wishes by being a flower girl at a wedding Sat. nite. Nancy said she smiled so big the whole way down the aisle. I am sure Nancy and Ken (of course) wept wearily.
Thanks again to John Zerger for raising over $3300 for Hope For Marrow by running 24 hrs. Thanks also to Shelly Copeland who participated in a triathlon for leukemia. She ran with Sam's name on her back.
Sam got to go Trick-or-treating this past weekend too. She made 5 houses and tuckered out. Matt really enjoyed himself too. Thanksgiving and Christmas will have to wait until late January. That's ok !
This week will be a week of pre-transplant tests at Duke. Next week will be tough with surgery. It is looking like Nov 12 or 13 will be DAY 0.
The Rainbow of Hope stuck again today. Nancy said that as they were loading up to go to their Duke "vacation" home, they saw a rainbow. Then Nancy called me mid-way there saying Sam spotted another rainbow. Every few minutes thereafter, they saw the rainbow. Nancy said the Hope was following them.
Update Mon: Oct 15
I just got off the phone with Nancy and they had quite the day at Duke today with all the pre-transplant testing. Sam was so happy to see the full rainbow that went from the hospital to their temporary home. She put up a rainbow shower curtain too. While not in the hospital, that will be the "vacation" home. The best news in days was the IQ test. Sam is brilliant, which we all already know anyhow. Nancy really did not want me to brag about this, but as a proud Aunt, I just have to. Sorry Nancy.
Update Wed: Oct 17
Nancy and Sam are are their way home from Duke. Yay. Sam's blood pressure is really high (apparently from the high doses of prednisone) and they are monitoring that close. She will have the CT scan at Brenner's tomorrow and then they have a weekend at home again. This is funny: Sam asked who was going to be the one to have to look for viruses in her "boogers". She had a test where they stick a tube up your nose. Anyhow, she has decided she definitely does not want that job.
Sam's latest learning experience has been Roman numerals. Ken got for the apartment a clock with Roman numerals. Sam of course noticed them and questioned what they were. She was taught the basics (I, V, X, L, C) and how to make some numbers. Sam loves counting, so naturally, she decided to write down numbers from 1-90 and figure the Roman numberal all by herself. Wow ! Do you remember what 50 is ?
Congratulations to Watauga County, NC for being #1 in the nation (in their population group) for the American Cancer Society Relay for Life. You can follow my links to see the website. ACS provided research funding to Duke in pioneering the cord blood transplants. Keep that in mind next year when the Relay For Life comes along.
Update Fri: Oct 19
Sam is having a bit of a tough time now. Her blood pressure is real high from some medications. She was was pretty sick last night. They spent all day at the clinic today. She will be home for the weekend and then it's surgery Monday for the central line(s). She has hit 36 lbs. Thanks again Kraft for the Blues Clues macaroni & cheese.
Check out all the new pictures I added to the picture link. She makes an adorable Snow White.
Update Mon: Oct 22
Sam had surgery (in Winston at Brenners) today to get the central line put in. She was at the borderline weight to have 1 or 2 lines. They did 1 line in the jugular vein. They did however have to do several cuts in the neck to access the vein. Sam is devasted and does not want this central line now (she wanted it because the ports are external whereas her current port is internal). Please say a special prayer for her today. This is the start of all the tough things that will happen to Sam within the next 3 weeks.
They are at home now and Nancy & Ken will start learning how to do the central line care. Sam talked them into using hypofix rather than tape and tegaderm (excuse the spellings). They will be at home (and at the apartment) at Duke the rest of the week. One week from today is the start of the radiation.
Sam is breathing and feeling so much better since starting the hypertension medication. She collected leaves, tried to climb a tree and even found several 4-leaf clovers Saturday. She even had a clown visit her and Matt Saturday. Sam made clothes for her cut-out dolls for hours. It was great to see her with so much energy. Against the wishes of her tastebuds, she broke down and ate some carrots (what used to be her favorite food). She closed her eyes and "just imagined they were delicious apples".
Update Tues: Oct 23
After a painful nite last night and this morning, Sam is doing a little better from the surgery. The central line in the neck is not pleasant for a 5 year old. She is definitely not happy about the steri-strips on the incisions either. They are off to Duke for the rest of the week. They will be staying at the apartment, not inpatient. If anyone would like to send cards, the apartment address is: 111 Ivy Meadow Lane Durham, NC 27707. As soon as we know IF mailings can be done to the bone marrow unit, I will let you know that address.
If anyone will want to send balloons to Sam while in the bone marrow unit, drop an email to Cathy and I will coordinate a Balloons for Sam schedule. The room is tiny and this will be a LONG haul, so I thought it might be nice to just keep a constant supply of fresh balloons.
Update Thur: Oct 24
Sam is going thru quite a lot at Duke. She questions every day "Now what are they doing to me today ?" Nancy is learning quick how to flush out the lines in Sam's new Hickman port. The catheter has 3 lumens to allow for fluids and medications to go in her and blood to be drawn. Sam now loves the idea of not having to be accessed (stuck) through her port-a-cath. Sound like a lot ? It sure is for a 5 year old.
Today will be another tough day. They will do radiation simulation. At that time, they will make the mold of here face. They make a mask that she will wear during the radiation. Sam will have to be completely still for 45 minutes - no nose scratch breaks either. They are so amazed at how good she has been. Usually they have to put the little ones to sleep to do all this. Nancy sits reading a book to Sam. They are reading the Secret Garden now. They may get an extra day at home this weekend, since they are thinking now about only 3 days of cranial radiation instead of the 5 - yay!
Please say an extra prayer for Ken & Nancy as they are going through the most stressful time now.
Plans have changed again since the posting this morning. Nancy and Sam were on their way home for the next 3 days. Sam got to make a radiation facial mask for her Nutcracker Barbie before they made one for Sam. They are so great with these kids. Nancy said Sam was an Angel (we all she is one anyhow) to lay still for 45 minutes without even flinching. Anyhow, they start just 3 days of cranial radiation Monday. They are not sure if she will get to go home after that - as she will start feeling pretty bad from that point on. So, it looks like 3 more Happy days ahead for the Washko's - yay ...!
Update Sat: Oct 27 (late)
I just got home after a wonderful day with Sam and Matt. Even with that bulky uncomfortable Hickman port she has in her neck and chest, wow, she's the old Sam again ! What energy she has. It was quite difficult to hold back the tears as Sam and Nancy danced to the Barbie Nutcracker movie. Sam had to quickly get dressed into her leotard and tutu along with her dance shoes when I arrived this morning (and by the way, it really was snowing at my house in Boone, NC when I left this morning). Nancy and Ken both took off for the day to get errands run. Sam, Matt and I acted out the Wizard of Oz and the Nutcracker. Sam has all the Nutcracker Barbies as I finished off her collection today.
Sam and Matt planned a picnic lunch as I made the sandwiches. Sam downed more food than I could imagine for a 5 year old. Yes, I want to see her nice and chuncky going into this transplant.
When Ken got home, we went out in the yard and there was Sam, playing baseball, swinging and sliding all with her pink tutu on !
I read some more from the Secret Garden as Nancy changed the dressing - wow, I am impressed with nurse Nancy. Sam helped flush the lines and then picked out some Princess bandaids to decorate the hypofix covering the dressing. (She can no longer use stickers as this new Hickman offers quite an opportunity for infection.)
It is so very hard to accept that Sam starts the cranial radiation Monday at Duke.
Update Sun: Oct 28 (late)
They are off to their apartment in Durham. They will be at Duke first thing Mon. morning for bloodwork and the cranial radiation. Hopefully this will be another good week for Sam.
Much thanks to Kathie Billing of Boone, NC who is running a marathon in January for Sam. Kathie is a member of the Leukemia & Lymphoma Society Team in Training Kathie saw an article in the paper, her heart went out and she is now raising money in Samantha's name - wow - thanks !
Update Mon nite: Oct 29
I am finalizing the Balloons for Sam schedule, as they will be checking into the bone marrow unit the end of next week. If anyone will want to send balloons to Sam while in the bone marrow unit, drop an email to Cathy and I will coordinate a Balloons for Sam schedule. The room is tiny and this will be a LONG haul, so I thought it might be nice to just keep a constant supply of fresh balloons.
I just spoke with Nancy. They are at the Duke apt now. Sam was as good as gold for the radiation today. If she was to get sick, it should have been within the 1st hour of the radiation. However, several many hours later, Sam now has a severe headache, nausea and vomiting. They think it may be from the high blood pressure. She may end up in the hospital tonight at Duke if she does not stabilize. Nancy said "just when everything is going good, you get cut down at the knees and start back on the rollercoaster ride". Anyhow, she will get a blood transfusion tomorrow. She is holding her own with the white blood cells, but her hemoglobin is low. That is the protein in the red blood cells that actually carries the oxygen. So in other words, oxygen is not properly getting to her organs. The hopes now are that they can get her hemoglobin up in order to start the total body irradiation next Monday.
Please keep giving blood and platelets to the Red Cross (especially platelets). She will soon be using LOTS of platelets and it would be great to replenish what gets used. Thanks to all who have given, especially the their 1st time !
Update Tues: Oct 30
I added a bunch more pictures. Check them out (select pictures from the left pink strip).
Update Wed: Oct 31
Good news, Sam is doing better after the blood transfusion. Grandma says Sam is dancing around with Nancy to the Nutcracker again. Today is the last day of cranial radiation and it looks like they will get to go home for a few days. This will be the last time at home for at least 3 months.
I need to ask once again that folks who have children or who have been around anyone sick PLEASE do not go visit them at home. This is so crucial since her blood counts are dropping and will only get worse. Even Aunt Cathy will not get to visit this weekend since several people at work have colds. Thanks.
Update Wed: Thurs Nov 1
Sam is home for her last few days in a LONG time. She did great with the cranial radiation. She met 6 year old Sara who is having her transplant next week. Sara showed Sam how the TBI is done (Sam starts that next week). Imagine a 6 year old teaching a 5 year old how to get total body irradiation ? It's quite a different world for these kids.
An infection has shown up in 1 of Sam's lines. We are hoping it really came from the lab and not her line. They have re-do lab tests to be certain. They cannot go into the transplant with infections. Again, I am telling everyone to please not expose any of them, especially Sam to any germs.
The kids got to trick-or-treat at the hospital. All the nurses dressed up as dalmations. Here are some pictures from Duke. Click here and Click here They were taken in the Rainbow room where Sam got her transfusion. It just happened that day they were doing the "Cell Mates" program and Sam got to make buttons while getting her blood transfusion.
Update Fri: Nov 2
Sam got a special surprise yesterday. She decorated her mask and got to ride a carosel. No word yet on the infection in her line. Actually, she has the 1 central line with 3 ports coming out. Only 1 port showed an infection. They said that all 3 ports should have showed an infection. So, they are still waiting for the results of the 2nd test.
Update Sun Nov 4
They are off to Duke again. Sam will start TBI tomorrow. They will start to see a change in how Sam is feeling. For now, she is losing her appetite again. About the only thing she will eat is Buzz lightyear chicken noodle soup. They are not too worried, as she has put on a bit of weight the past few weeks.
It looks like the transplant date is now changed to Wed, Nov 14th.
Update Mon Nov 5
Today is T minus 9 (t-9). This morning will be bloodwork at Duke and then the start of TBI (total body irradiation). Her blood counts will start dropping significantly. The hope is to keep from admitting to the hospital until Friday. She has started the 4 times per day mouth sore care. Maybe that's why she is not eating as much now.
I ask all family members and friends to please be patient with Nancy and Ken. They are on real short strings now as they closer. This is like nothing anyone could imagine in a zillion years for them. Things are even tough for 3 year old Matt. He asked Nancy the other night "Mommy, why do you spend so much time with Sam and not me ?". Thanks to the Grandma's and Grandpa's for helping to keep him pre-occupied.
Click here to see a great picture of Ken, Nancy, Sam and Matt at a wedding just before the leukemia diagnosis. Sam and Matt were the "mini" bride and groom.
Update Tues Nov 6
T minus 8. Sam did great with TBI yesterday. She walked away dancing. The 4 times per day mouth care added to the dressing changing, lab work and radiation are taking the entire day now. Sam is determined not to go into the hospital until Friday. Today, Sam had radiation at 8:30 am and will have more at 2:30. She may get to go to cell mates at 1:00 too before radiation.
Please say a special prayer for 6 year old Sara Morgan. Today is her day of "rest" and tomorrow is her transplant.
Please do mailings to the Duke apt and not the bone marrow unit for now. Everything mailed will have to be decontaminated and there are certain things Sam absolutely cannot have. Contact Cathy for address info.
Update Wed Nov 7
Update at 4:45 pm - I just spoke with Nancy and they were inbetween appointments at the hospital. Most kids at this point of radiation are on IV nutrition. Sam, however got to frost and decorate a Krispy Creme donut with sprinkles. She's only eating a bite here and there, but she is fighting. Nancy also said that most folks in the radiation waiting room were all gloomy. When Sam came in, they asked her to do some Nutcracker ballet dancing. Nancy said everyone smiles and lights up. Her condition (being as "good" as it is at this point is very rare).
Yet another infection has shown up today in her central line. So, she had to have her port accessed for medication and bloodwork. Thank goodness she at least has the port in her !
Matt was very happy to see Sam this morning. He woke up at 5:30 am and insisted on seeing Sam. He pulled back her covers, peeked at her and ran back to Nancy saying "Mommy, Sam really is here now".
Please also pray for little Emily who is in day 34 after her cord blood transplant.
What a fighter this little one is. Nancy says she has a "virgin puke bucket". They started the day yesterday at 5:30 am and did not get back to the apt until 11 pm. They were able to get home around 6 pm long enough for Sam to wolf down a big bowl of Blues Clue macaroni & cheese, draw a painting and try out the new glitter glue. Matt got to go to the dollar store and what did he pick out - a pink and purple Barbie outfit for Sam. Imagine that for a 3-year old !
Anyhow, Sam has developed an infection in her central line. It is actually a bacteria that grows on the skin that you & I normally have. It's not good for her to have. On the 1st dose of antibiotic, she had an allergic reaction. So, the next 2 doses were 3 hours each in the hospital and actually in the bone marrow unit. Nancy said she was not ready to be there yet. They start the whole process off again today.
Please pray for 6 year old Sara Morgan who has her transplant today.
Update Thu Nov 8
T minus 6 ! Today will not be the best of days. Sam will have radiation, followed by testing. She may need a new central line put in. She has developed an infection in all 3 of the lumens that are attached to her Hickman central line. This is not good. They are starting her on a round the clock antibiotic drip. That means checking into the bone marrow unit today. There may be some surgery today. As soon as I get an update today, I will post it.
Meanwhile, she's quite brave and has a great attitude. Yesterday, she and Grandma were making pouches to help hold the Hickman in place rather than just having it hanging and pulling or rather than that darn dreaded tape. Any "stickies" bother Sam more than all procedures (that now includes band-aids). Her skin is so sensative.
Update Sat Nov 10:
T minus 4. I spoke with Nancy last last night. She was headed home to sleep. When she left, Ken and Sam were dancing in the hall. Ken is the "prince" of course. She starts high dose chemo today and then they head way down to the bottom of the rollercoaster ride. You have to ckeck out the pictures from the 1st day of the bone marrow unit. Click here and Click here
Update Sun, Nov 11 (late)
T minus 3. Sam is remarkable. I truly believe God has that little one by His hands comforting her. She was scheduled for a horrendous medication at 3 pm today. They had planned on sedating her at that time. The fevers are expected to be 104-106 tonight and tomorrow. This medication is apparently a mean bacteria.
But, Nancy, Ken, Sam and Matt had a great family time today on the bone marrow unit. Sam was so full of herself, dancing and posing as a ballerina. Sam and Matt literally played for hours on the floor in the bone marrow unit. Wow, who would have guessed.
Nancy is remarkable. Sam's central line had a break today and due to Nancy's quick thinking, she stopped it with minimal blood loss (this is the jugular vein we are talking about too). Every white cell is needed and being accounted for at this point. The 1st thing the nurse said was "What was she doing, dancing again ?" I am telling you - she is truly amazing.
Update Mon, Nov 12 (early)
T minus 2 ! By the way, you should see Sam's hair - beautiful new "angel hair" about 1/4" long now. Sam has started a new sport - basketball. Everytime after she washes her hands and dries them with a paper towel, she throws them in the trash can. She has a scoreboard above the "trashkin" as she labelled it and gives herself 2 points for every basket. She has decorated Alice, her IV pole with pink and purple koflex. That's a tape that sticks to itself and looks like an ace bandage. No more stickees for Sam with koflex around. Stickees (bandaids and tape) are Sam worse nightmare.
By the way, don't foget to check out those bone marrow unit pictures. She did not eat a bite yesterday and the ATG she got yesterday at 3 pm has started the vomiting. We are here !
Update Tues, Nov 13
T minus 1 - the day of rest ! Sam is still quite the fighter. She held her own until 7 pm Sun night when the chemo hit her hard. Her fever spiked to 104, which is better than the norm. Most likely, all her t-cells are dead. T-cells are special lymphocytes that help the body's immune system kill bacteria and other harmful things in the body. Sam's leukemia is t-cell. Only 15% of leukemia patients have t-cell leukemia, the rest have b-cell.
Monday was her last day of chemo (well, I guess she gets a dose of the ATG again today on her "day of rest"). She did not feel good at all Monday (no eating, a lot of vomiting and fevers). When I asked her if she still danced the Nutcracker while doing the blue mouth wash (the one that burns her mouth sores so bad), she said "No, but Daddy played the song from Alladin for me". So, the dancing may be stopped for a while, but, she is still fighting for all it's worth. Sam is something else. I hope Ken & Nancy get some sleep tonight.
Check out this picture...they made her a name badge just like the nurses, so she thinks she is a nurse. Instead of R.N., she put something like P.I.B.M.U. (patient in bone marrow unit). Check out all that hair coming in too !
