Update Fri, Feb 22, 2002
Day 99... Wow, alomost day 100 and Sam is already home. They have not gotten all the results of the 100 day studies, but they expect Sam's immune system to be at 10%. So, Sam has a long way to go until her system is normal again. The hopes are that after a year, her immune system may allow her to start all her infant immunizations again.
I have to share this cute story from Nancy:
Sam and Matt were playing before Matt's nap and Matt said his "critter" named Clarice (Rudolph's friend) had reindeer leukemia so Sam dressed as what she calls a "princess nurse doctor" (which is what she wants to be when she grows up, today anyway) - wearing sparkly purple dress and green scrub top with a mask and stethascope and crown and beads and fairy wings. They both had their doctor kits out and they gave Clarice a transplant after they tested all of Matt's other "critters" blood for a match. Clarice is doing much better now too. It was such a precious interaction to watch. Matt is so grown up now.
Life is quite different for Sam and Matt. But so many people have really helped pull Nancy & Ken thru this so far. Thanks.
Update Mon, Feb 25, 2002
Day 102... Wow, Sam has surpassed the 100 day mark which is a milestone in the transplant process. Her 100 day tests came back showing her new cells are 100% donor cells and none of hers. Yay. These new cells still battle her own body, so that is why she takes the FK506, anti graft vs host disease medicine. She does still get flare-up GVHD rashes, bu the topical cream seems to help. They are going to try to introduce some lactose type foods into her diet again.
It's interesting that a 5-year old would feel this way, but Sam was scared to start going back to her "old" hospital. She cannot remember some things and people from before the transplant. But when she saw one of transplant buddies, she was happy about Brenner Children's hospital.
Please pray for all the children in the transplant unit, especially Sarah-Morgan, Omavi, Ryan and Sydney. And Thanks God for the miracle of Sam's progress.
Update Tues, Feb 26, 2002
Day 103...Things are hectic for Nancy. Dealing with all the unpacking, getting the medical supplies all straightened out, the daily medical routines and then the driving to clinic is quite a hectic pace. Being home again is like Christmas for the kids, as they get all their toys they have not had in 4 months.
Update Wed, Feb 27, 2002
Day 104.... It's barely over day 100 and it seems like an eternity. Sam is doing good. She seems to be keeping the GvH rash especially on her hands and feet. It tends to get firey red too. There is now a question of it being a fungal rash.
It's so very hard for the kids being in isolation. Sam had various programs and her transplant buddies (nurses and doctors included) at Duke. Things are different now and I guess will take a while to adjust.
I must share a few cute kid moments that Nancy shared:
Sam has been taking a medicine called flagyl to help with a bacterial imbalance (which she finally is off). Sam came up with a cute joke. "Why was the girl so careful with her medicine Mommy?" "Because it was flagile". Pretty good for a 5 year old !
Here's another: she was reading an American girl short story book - Felicity (from the 1700's)I believe, and Felicity broke her arm and had to have leeches put on it to reduce the swelling and Sam said "Yuck - bugs sucking her arm, why didn't they just give her some Lasix?"
And this from Matt (just 3 years old) is so sweet: He asked Nancy (as he was riding his trike around the driveway, "Can a boy tell his Mommy and Daddy anything he wants to?" Nancy said yes of course. He said "Good - I love you Mommy and I am so happy to be home!".
For everyone reading this, please take the time out each day for your kids, hug them and do something fun with them. I thank my parents so much for growing up with us kids, taking us camping, crabbing, mountain climbing, iceskating and especially playing games and letting us have pets in the house.
Please also take a moment to pray for all the other transplant families and the kids still struggling for life daily - especially Sarah Morgan, Sydney, Omavi and Ryan. For the nurses and doctors who tend to these kids and their parents minute by minute month by month. And for the other kids showing so much progress - Brett, Michael, Garrett, Brianna, Benjamin, Julie...
Update Thur, Feb 28, 2002
Day 105... Sam continues to do good each day. Again, she still has the graft vs host (GvH) rash that is being controlled with topical cream. The GvH medication FK506 level has been low though. Her nagnesium level is getting higher, so they are able to give less mag thru the nightly IV. I know Nancy would love to not have to do the nightly IV. Sam is losing weight, but trying new foods. There are some things about her past that she does not remember. So riding her bike was new to her and some of her books are new to her again.
Sam still has that sweet little singing voice. Yesterday, she sang the song from Beauty and the Beast Enchanted Christmas. That reminds me, I wonder if their Christmas tree will turn into a St. Patrick's day and Easter tree ? After all the Valentine's Day tree was fun for the kids to decorate ! Matt is quite the artist. He is so meticulous and very talented. I guess he takes after his big sister.
Update Sat, Mar 2, 2002
Day 107... Sam is doing good. She is making platelets like crazy. She is holding her own on the heoglobin (red cells) and white cells. Her FK level is way too low. That's her GvH medicine level. But nothing stops Sam. She loves reading and playing baseball (actually it's t-ball). Sam and Matt are real sluggers. Matt accidently hit Sam with the ball right in her chest where she has the central line.
Thanks so much to everyone who helps out. All the big and little things really help out Nancy & Ken.
Update Sun, Mar 3, 2002
Day 108...Sam is feeling good. She is feeling quite emotional though. That's from all those medications in that little body. Things are a far cry from normal ! Nancy stays so busy dealing with medications are rarely gets to bed before 2 am. Sam's foot hurts pretty bad and I hope it is because her marrow is cranking out the platelets and red blood cells. Grow cells grow - but no more pain please !
Nancy said Sam and Matt were quite clingy yesterday. Matt even insisted on sitting at Sam's feet during the dressing change. I remember the day when he did not want to even look at the tube coming out of her chest. I know the poor little guy has so many emotions and feelings pent up inside him.
Thanks God for every day and for the strong bond Nancy and Ken have to continue to make it thru this daily.
Update Mon, Mar 4, 2002
Day 109...Sam continues to feel good, although she has foot pain and the rash. Today is busy - clinic day. I pray they get her FK levels stabilized.
I was so happy to hear that 5 year old Brett (had his transplant about 2 weeks before Sam) finally got to go home. 14 year old Julie will be flying home this week too. Almost 2 year old Garrett will be having his 100 day tests this week. Special prayers go out to 7 year old Sarah-Morgan who has the graft vs host disease real bad. Please pray that God will comfort her and her family. Little Omavi and Sydney need special prayers too.
Thanks again so much to all who have helped out. So many of you have helped Sam, Matt, Nancy and Ken. I personally am so overwhelmed by so much kindness and generosity.
Update Tues, Mar 5, 2002
Day 110... Sam is feeling good. Clinic today at Winston. Sam has the firey red rash with some blisters, but she goes on not letting it bother her. That Graft vs. host disease is nasty. I thank God every day that it is not attacking her stomach and she is staying healthy. I also pray that they get this back in control. It is very harsh on Nancy and Ken.
Nancy's reflections on her bone marrow families, especially the ones that have lost their children remind me how precious life is and thankful for life. We never know what will happen tomorrow with our own health.
Update Fri, Mar 8, 2002
Day 113...Sam is doing good. They had to make an unexpected trip back to Duke, where she tested positive for a bacterial infection. They have had to go back on some nasty medicine Sam does not like, duoble the dose on FK (GvH med) and back on steriods. This is ok, it's actually better than what the original thoughts were. The GvH rash is going away and so have the blistered hands and feet. This is all a process of balancing levels within her body. I am so happy that Sam is the smart little one who takes off in her own little world of reading, crafts and t-ball.
On another note, my 21 year old friend Ivette is back in remission (from her leukemia) and her little sister is a perfect match for her transplant. God is so great. I did just also find out this week that another friend of mine is in stage 4 of lymphoma and he may go the bone marrow transplant route too. He is receieving treatments at Duke.
On a final note, little almost 2 year old Garrett is having his 100 days this week, so please pray they all come back normal. He's so adorable and had been through so much in his less than 2 years.
Update Mon, Mar 11, 2002
Day 116... I am so very thankful that Sam is doing good. The rash is disappearing, so maybe the double dose of anti-GvH med or the steroid is helping. Samantha is feeling so full of energy these days too.
Please say special prayers for 4 year old Omavi from Salisbury who is really struggling for life. His 6 year old sister came thru her transplant so good too. 2 year old Sydney is doing better and finally showing cell growth - miracles happen ! 7 year old Sarah-Morgan and baby Ryan need special prayers too.
Also, don't forget platelet donations to help save these lives.
Update Tues, Mar 12, 2002
Day 117.. Sam is doing really good. The rash is gone and she is even asking for her candy she got from Santa in her stocking. She still cannot eat hard or really chewy type foods. One of the side affects of one of the chemo drugs is a sore jaw. Last night was almost a tragedy - Buddy Bear was no where to be found. Nancy even woke up Matt, thinking he hid Buddy on Sam. Matt just loves the attention he gets when he teases Sam. After many hours of searching, Buddy showed up in Sam's clinic backpack. Today is clinic day. Sam has decided that Matt gets all the Grandparent time, so she wants Nancy to take Matt to clinic and let Sam stay at home. That will be the day !
Please say special prayers for 4 year old Omavi. Things do not look good now. But God has answered prayers for little Sydney and she is miraculously making a turn-around. Sarah-Morgan and baby Ryan need special prayers for their GvH in the gut too. 14 year old Julie and 5 year old Brett finally made it to their homes in FL and GA. Yay !
Update Wed, Mar 13, 2002
Day 118... Sam is doing great. Al her numbers came back GREAT yesterday. She is cranking out those healthy blood cells - platelets, white blood cells, hemoglobin,... Her FK506 level is stable. That is the med for the graft vs host disease. It's used to help keep those healthy new cells from fighting her own body. Her glucose is a little high, but, she is back on steroids. She is still fighting the bacterial infection cdiff and I pray her running nose is just allergies.
Thanks for all your support and prayers !
Update Thurs, March 14, 2002
Day 119... Life would be boring if it were not for this rollercoaster ride. Sam needs some special prayers today that she can stay healthy. Today is an unexpected clinic day. Sam's color was not too good yesterday, her throat hurts and Nancy said she has white spots. This is a scary reminder of the when she was 1st diagnosed how bad her throat was. I am not sure what to pray for - strept throat, thrush or what. On a good note however, Sam is feeling ok. She started yesterday as Cinderella, but thanks to Grandma, played the rest of the day out as Ariel. She is still waiting for the Disney catalog to come out with the Princess Samantha items.
Little Omavi needs lots of prayers today. His kidneys have shut down and he is in critical condition. It breaks my heart so much. I remember the day when he checked into the bone marrow unit, Sam was so very upset that the little guy would not wear his face mask outside his room (that is the rules). When I told her he was just 4 and had to learn the rules, her reply was "I was just 4 and I wore my mask my very first day". Omavi's 6 year old sister Brianna had her transplant about a week before he did. I cannot imagine what his family is going through. They too are from Salisbury, NC. I also heard that 7 year old Sarah-Morgan is in so much pain and they are doing all they can for her. 2 year old Sydney and 1 year old Ryan are holding their own.
Update Fri, March 15, 2002
Day 120... Sam is feeling good. Her color is a little gray and she still has the white spots on the back of her throat. We hope to hear today the results of the overnight strept test. This is all very scary, since these were the signs when she was 1st diagnosed with leukemia. But, the doctors say if she were to releapse, they would see it in her blood counts. So far, so good. I hold my breathe and just pray that God will hold Sam and keep her healthy for us. By the way, her hair is coing in - about 1/8" and is dark and a little curly like when she was a baby. Sam wants so bad to interact with friends and family, and this desire is so hard on Nancy and Ken. It's easy to want to break the rules. It reminds me of what Julie's Mom (the 14 year old who just got back home to FL) said the other day - Julie wants to go to the mall and a movie and hang out with her friends - but Mom is the protector and the mean one !
Nancy said that Matt is craving fruit and he's eating lots of vegetables all the time. It's hard to keep him on such a good diet when Sam cannot have fresh fruits and vegetables. I sure hope she gets some immunity in time for Grandpa's blueberry and raspberry season this fall.
Pray that God will comfort 4-year old Omavi and his family as he struggles for life. Pray that Garrett's 100 day studies show up good, Sarah-Morgan can stay painfree, Sydney's cells keep miraculously growing, baby Ryan can handle his severe GvH, Emily can show some better signs and for all the other kids like Julie, Brett, Benjamin, Michael, etc.
Update Mon, March 18, 2002
Day 123.... Sam is doing great. She is playful and having fun like a kid should. Sam and Matt love playing t-ball. They have about 6 bases that are all over the whole yard though. I thank God every day for this wonderful little miracle.
Please say special prayers for the other kids at the Duke Pediatric Bone Marrow Unit - especially Sarah-Morgan, Omavi, Sydney and baby Ryan who are struggling.
Update late afternoon Fri
Still no word back yet about some tests Sam had done yesterday. But, thanks God, still no fever. The throat stil has the white spots. Nancy, Ken, Sam and Matt are all enjoying Matt's new Thomas the Tank Engine bed Grandpa made. Matt wants it to really move like a train though.
Please say special prayers for Sarah-Morgan who may have a fungal infection in her lungs now. She is a week ahead of Sam and "taught" Sam how to do total body radiation.
Update Tues, Mar 19, 2002
Day 124... Sam is doing good. She still has the white spots on her tonsils, but still no fever. She is also getting some headaches, but just keeps on playing.
Prayers are working for most of these kids. 4 year old Omavi and 2 year old Sydney are making some miraculous turns. Sarah-Morgan and baby Ryan need some special prayers. As soon as the funding gets approved for my friend Ivette, she will get her little sister's marrow. Thanks to all the folks who turned out for the St. Elizabeth's bone marrow drive this past weekend.
Update Wed, Mar 20, 2002
Day 125... Sam is doing good. She still has the white spots on her tonsils. They think it's viral. She has a slightly elevated temperature, but not a fever. Her glucose is high, but she had to go back on the steroids. They are leaving the IV magnesium at the same level now. Sam had to have her once a month pneumonia-preventing inhaled treatment yesterday. She did great and even saved some of the candy (to get rid of the nasty taste) for Matt. She also had her port-a-cath accessed yesterday. That's the surgically implanted access to her vein located in her chest. As soon as she gets to only a once-a-month visit, they can take out the central line and just use her port. The port may stay in for a year or so. Still no results back on her immune studies. It takes a while to do all the detailed cell testing.
Update Thur, Mar 21, 2002
Day 126... Sam continues to do well. Other than a sore throat, she is doing good. Her blood numbers are good. White blood cell count (WBC) is a little low, but stable. She is fighting a little something, so it's good she is staying stable. It's hard to imagine where she could even pick up anything, as they are so good about keeping her isolated and germ-free.
Sarah-Morgan needs extra special prayers. I heard she does have a fungal infection in the lungs. That little one has been through so much the past 133 days. Omavi needs special prayers.
Update Mon, Mar 25, 2002
Day 130...Sam is really doing good and feeling good. Nancy wants so bad for things to be "normal" again for the family, but patience is the name of the game for quite some time. We are so blessed that Sam is doing as well as she is.
Please say special prayers for Omavi's family. 4 year old Omavi (also from Salisbury) went on to his eternal life yesterday. Omavi was a character when he first arrived on the bone marrow unit. He would not wear his mask and that really upset Sam. Then he would pull the nurse call cord in the bathroom just for kicks. When the nurse would arrive, he would say, "I want to go home". He spent countless hours with Sam making Christmas ornaments with Sam.
On another sad note, Sarah-Morgan is not doing well. Sydney and baby Ryan need special prayers too.
Update Tues, Mar 26, 2002
Day 131... Happy Birthday tomorrow to my little sister Nancy who will be the same age as her big sister Cathy... mmm ... figure that one out !
Sam is doing good today. Thank you God !
Update Wed, Mar 27, 2002
Day 132... Happy Birthday to my sister Nancy. Nancy is such a special gift grom God to be the awesome Mother to Sam. She has fought so hard to keep Sam here with us a deserves at least one day of rest.
Sam is doing good. She still has those spots on the back of her throat with no answers yet as to what they are. I ask God every day for no relapse.
I ask that everyone say special prayers for a friend of mine who just lost his wife to cancer. He has 4 young children. And special prayers for the comfort of 7 year old Sarah-Morgan who continues to fight her battle with the severe GvHD in the gut and now the fungal infection in her lungs.
Update Fri, Mar 29, 2002
Day 134....The miracle of Easter is like the miracle of Sam. God took Sam by the hand and gave her new life. Thanks so much to some parents somewhere in NY who donated their baby boy's umbical cord after birth. We just have so much to be thankful for.
Sam and Matt had fun yesterday on a real baseball field. Sam's numbers are doing good and they are even lowering her IV magnesium. The hope is to one day soon have surgery to remove that Hickman central line. Of course that would mean the little bit of pain of having to access her port, which is done once a month anyhow.
It is with the heaviest heart I must tell you that 7 year old Sarah-Morgan went on to be with Jesus last night. This little one was 1 week ahead of Sam in the transplant process. She taught Sam how "to do" total body radiation. I really question God how he could have allowed Sara-Morgan to get cancer at age 3, go through 2 years of chemo, relapse, have a transplant and then suffer so dearly for almost 150 days. But just like Jesus, Sarah-Morgan suffered, died and is now seated at the right hand of the Lord. Please say a special prayer for the comfort of her family.
I am constantly reminded the God IS in charge and all I can do is pray to God for Sam's health and happiness.
Update Mon, Apr 1, 2002
Day 137... Sam is feeling great and so full of herself. She called this morning and very seriously told me the roof of their house blew off and they can see the birds making nests. Then she giggled April Fools ! Sam has not stopped giggling since September. I look back and reflect on how deathly ill she was in July and August. What a trip she has gone on !
Good news from Duke's 5200 - baby Ryan has checked out of the bone marrow unit (for about the 4th time) and 2 year old Sydney came thru her surgery to wrap her stomach around her esophogus to prevent reflux. This whole bone marrow process is so grueling on the little ones.
Update Wed, Apr 3, 2002
Day 139... Sam, Nancy and Matt all went to clinic at Brenner's yesterday. The kids enjoy the things like the helicopter pad and the tile cracks in the floor. Sam still has those white spots all over the back of her throat. They are puzzled and have various ideas on how to treat them. She gets a belly ache after eating, is having beeps in her ears again and is showing some rash flare-ups. Overall, Sam is feeling good though. All these little things though are a constant reminder I guess from God that He is the one in charge.
Update FRI, Apr 5, 2002
Day 141... Sam is doing good. The doctor called to personally tell them that some neutropenic diet restrictions can be lifted ... yay. What does that mean ? That means her immune system is showing some progress. They can eat some fruits like apples and peras that have a thick skin. The skin will have to be peeled and then the fruit re-washed after peeling. Sam is so very happy. She has been asking for months "But when can I eat an apple ?". She still cannot eat fruits like strawberries, raspberries... with soft skin. Too much bacteria and fungi can in those. She still has all the restrictions like the mask when outside of the house, isolation and lactose diet. Progress one-step-at-a-time is so great.
The next holiday in Washko house will be Matt's birthday in May. He is already "shopping" for what kind of party he will have.
In case anyone is interested, there is a walk at Duke called Rainbow of Heroes Walk. It is to honor all the patients and familes of the Duke Pediatric Bone Marrow Unit. It's Sat. May 4th. You walk 5200 yards (the bone marrow unit is known as 5200) with a balloon. At the end, they release the balloons and create a rainbow. There is also a Wall of Heroes with stories and pictures of the families. You can be sure one Aunt Cathy will be there and there will be a great picture of the Washko's with their Duke Kids Rule t-shirt. If anyone is interested in more details, please email me.
Update Sun, Apr 7, 2002
Day 143....Sam is doing good. She still gets belly aches when she eats, but at least she eats. Her FK506 level (graft vs host disease med level) is lower than what they would like, but no major outward signs of GvH. Samantha loves her dressing up like a princess and dancing. And by the way, her new hair is coming in all nice and fuzzy.
Good news from the bone marrow unit - I heard 2 year old Sydney may get to leave the hospital this week. Yay - what a miracle. Please pray for 22 year old Michael Miller who is is need of special prayers and little Jake Courtney needs extra prayers too as he recently relapsed.
Update Wed, Apr 10, 2002
Day 146... Samantha is doing great. Nancy called me all excited yesterday after clinic saying that they did not have to do the overnight IV of magnesium last night. Yay - especially for Nancy. She can sleep a whole night. But poor Sam and Matt do not get anymore daily medical art supplies. They still have to do the daily flushing of lines and central line dressing change. They even said that Sam is getting to the point where they are close to doing bloodwork through finger pricks and then once-a-month thru her port-a-cath. Samantha cannot get in water with her central line and that will not be fun this summer !
Update Mon, Apr 15, 2002
Day 151... Samantha is doing so good. I got to see her yesterday. Her new angel hair is so beautiful. And she never stops smiling. She looks so skinny, yet is so full of energy. I did not get to stay long since I was off to donate platelets. Thanks so much to my friend Dannette who has recruited more of her family members to donate - Jennifer, Delores and Nancy. We had quite a platelet party in Winston-Salem. Thanks to all who are donating platelets. They truly save a life within 5 days !
I am not sure if any of you gave heard about an event called Celebration on the Hill. It's a day in September when the American Cancer Society is sending advocates from communities all around the country to D.C. to make congress aware of the fact that the American public wants cancer bills to be a top priority. See www.cancer.org for more info. Anyhow, the Celebration bus going around the country came to Boone, NC this weekend. I got to sign the bus (in honor of Samanatha) right next to the door.
Please say extra prayers for Michael Miller and 2 year old Sydney who are really struggling after their transplant.
Update Thur, Apr 18, 2002
Day 154...Samantha continues to do great. She had a few days without the white spots on her throat, but now they are back. Why, why, why ? They just do not know. They had a great day at clinic Tuesday. The nurse is so nice to put Matt through the same routine as Sam. They go in and both kids get to be weighed. The nurse commented about's Matt's new buzz hair cut. When she said it looked like a big boy haircut, Matt said, "No, it looks like I hade chemo".
I want to remind everyone to support their local Relay For Life. It was a research grant from the American Cancer Society that funded the cord blood stem cell transplant. The hopes with research now are that one day, no child will ever even have to have a transplant.
Special prayers go out to all those who struggle for life daily - Sydney, Michael, Ryan, etc., and for all the other little transplant kids - Garrett, Brett, Benjamin, Emily, Michael (there are 2 Michael's), Jake, Miranda, Austin, Brianna and many many more.
Day 158... Samantha continues to do well. Her white blood cell count is up a little, but at least within the normal range still. I hope with this week's clinic visit it stays the same. I know they cannot wait to get the central line out, hopefully within a month so Sam can actually go in the water. I hear Garrett gets his line out a week from today. Garrett is a toddler with neuroblastoma who had his own bone marrow transplant.
2 year old Sydney needs extra prayers now. She is bleeding from her trach. They are giving her a constant drip of platelets. This little one has been thru so much. I hear miracles are happening with Michael Miller too. Please pray for the family of a friend of mine who passed away last week with lymphoma. They were in the process of testing his siblings for a bone marrow transplant when things went downhill quick. It's so hard to understand all this cancer all around us.
Update Wed, Apr 24, 2002
Day 160... Samantha is doing great. They had a really great clinic visit yesterday. The helicopter nurse let Sam and Matt get in the helicopter and touch the nose. They are officially jr. pilots and can access the helicopter anytime it's not in use. Wow, these kids get treated great ! Thanks. Some great news - Sam only has to go to clinic every 2 weeks and the next visit they will set up the date for surgery to remove the central line. That is a HUGE milestone. She will then only have to have her port-a-cath accessed once a month for blood tests and flushing. That port will probably stay in a few years until she is "out of the woods". Wow !
In case anyone is interested in her numbers, here is a summary from Nancy:
Sam's bloodwork is great again. Hemoglobin = 12.8 (great!); Platelets = 286,000 (Awesome! Way normal!) ; WBC = 8.9 (Good!); Segs 65% (good); FK level = 3.3 (low - so we may have a change in upping this medicine or maybe wait and watch her closely since we have had no signs of GVHD, we'll find out tomorrow whether Dr.Martin wants to increase her FK level or not.); Magnesium = 2.0 (high!which is good since we have been off the IV mag! So now we'll wean of the oral mag in a week too); kidney and liver functions all look good, BUN (which I think is a kidney function that seems related to hydration) is a little high as it has been for her for a while now but since this one I think (don't know for certain) seems to related to the time of day her bloodwork is taken, I think it's high in the AM since she hasn't had any fluids all night long, so is less hydrated in the morning, so this always seems higher with her first morning blood draws. Her creatinin is always low and good so that's a good indicator of how her kidney functions are and that they are OK. Glucose was good too. We're also switching off of the yucky tasting once a month Pentamadine breathing treatments and switching to Bactrum twice a day for 3 days a week. It's more often, but Sam likes the raspberry taste of this medicine so happily went for this change. Her counts have been good and platelets way high for a while now, so it's safe enough to switch to this now (the drs. don't switch to it unless the counts are stable and high consistently). And there you have it.
Please say special prayers for 2 year old Sydney who is struggling dearly for her life daily. Prayers are working for Michael Miller who is miraculously up and about now.
By the way, Nancy and I are no longer the same age as of today !
Update Fri, Apr 26, 2002
Day 161... Sam is really doing good. She is so full of herself - doing dance recitals at home.
I have finally finished my Relay For Life edition of a book called Samantha's Rainbow of Hope. It is actually written and illustrated by none other than Samantha herself. She wrote it just after she turned 5 years old while getting chemo and radiation. It is amazing what this little one has had to go through. It's a 30 page booklet since I had to interpret her spelling. I added some pictures too. If anyone is interested, let me know. All proceeds of this edition go to the American Cancer Society. You can send Mail to Cathy
Update Mon, Apr 29, 2002
Day 164... Sam is doing great. She has a little rash that Nancy & Ken have to always worry about being GvHD. She is feeling good and is especially happy about the trophy her dance teacher gave her. Nancy got to go accept the trophy at a reciptal and you can bet that was quite emotional for her. They got to see their Hunny puppy who is now grown up. Hunny is all Matt has talked about since Sam got sick. Thanks to such wonderful friends for caring for a little boy's buddy. Check out the picture.
Please say special prayers for 2 year old Sydney and also for Michael Miller who are both back in PICU. Also, please pray for those who are daily beginning their new battle with cancer. And consider the gift of life - donating platelets. They are needed far more than blood is !
Update Thur, May 2, 2002
Day 166... Samantha is doing great. She seems to have some rashes that constantly reminds the of the GvHD. They had her blood levels checked to see if they need to up the FK506 (anti-GvH med). Just when they thought they would get a week without clinic, Sam had one of her 3 lumens (on her Hickman central line) clogged. I know Nancy cannot wait to get that line out. Sam wants it out, only so she can go in water. Otherwise, she would rather keep it in, since it will mean more needle sticks to access her port. What thoughts for a 5 year old.
Please say special prayers for 6 year old Brianna who is back in the hospital with a high fever. That family has really been through some tough times, especially after their other child, 4 year old Omavi went on to his eternal life in March. Syndey needs extra special prayers too. Michael Miller is once again miraculously out of PICU !
Update Fri, May 3, 2002
Day 167...Sam is doing good. Her FK506 level is actually good and no more oral nasty tasting magnesium. Yay for Sam. She does still keep getting a rash and has some belly aches. She keeps going and going though. Sam is really into looking up words in the dictionary these days. She enjoys writing stories, just like Aunt Cathy. She really really is excited about next week to find out WHEN they will set the date to remove the central line. Garrett just had his out, Brianna had hers out and Brett is getting his out the end of May. I know all these little guys can't wait to get in the water.
I am off to Duke this weekend for the Rainbow of Heroes walk to honor all the 5200 families (5200 is the pediatric bone marrow unit at Duke). I am walking to honor my little hero - Samantha !
Monday, May 7.... Happy 4th Birthday Matt !!!!
Update Sun, May 6, 2002
Day 169... Samantha is doing good. She seems to have a pretty good rash in some places. That does not stop her from playing baseball and doing all her fun crafts. It breaks my heart when I have to leave her house and she cries. But it was so cute when she asked Nancy today "Well, Mommy, can you just pretend to be Aunt Cathy ?". I love it.
Although the rain caused the Rainbow of Heroes Walk to be moved indoors this weekend at Duke, it certainly did not put a damper on things. It was great to see little Garrett running all over the place. I think the nurses just played with him for hours. It's amazing how well he is doing and he does not even have to wear a mask. He had his own bone marrow though. What a fighter he is. It was also great to see Sam's "Best Buddy" Pat from Duke and meet her whole family. Sam, Nancy and Ken really loved the pictures I brought them back too.
Well, my double donations of platelet days are over. They will only let me give single donations. I must admit, I feel batter physically. I like to spend the tiome reflecting on all those who are currently using lots of platelets and those who have gotten that special gift of life.
Good news from the bone marrow unit, Sydney is getting weened off the respirator and will hopefully be out of PICU this week and back on the unit. I got to see her Mom and Grandmother this weekend and what a strong family they have had to be. Please say extra prayers for this little fighter.
Update Thur, May 9, 2002
Day 172... Sam is doing good. She does have a little GvHD now. That is ok, because as long as there is some GvH going on, it's unlikely for the leukemia to come back. The rash gets firey red, but the topical graft vs host cream works great.
Sam and Matt got to see one of their cousins for the 1st time in 6 months. It was good for Nancy to see him too. They got to play baseball together. The kids also got to go on a firetruck and back on the helicopter at the hospital. I am so thankful how generous people can be with helping the little ones. It means so much. Thanks.
Please say special prayers for 2 year old Sydney who is still in PICU. She is fighting so very hard each day. And don't forget to check out the new page I have on the left bar to order Samantha's book !
Update Fri, May 10, 2002
Day 173... There are so many prayers to be said for so many people today. Sam has the GvHD rash pretty bad (firey red). The poor little one had a bad headache yesterday late too. I just don't think there will ever be any rest for these parents. I must say that Samantha is quite a grown up little girl. She got to share her leukemia questions with another family member recently diagnosed eith leukemia.
I just got news that 3 year old Kayleigh on the bone marrow unit lost her battle with leukemia this week. And 2 year old Sydney needs extra special prayers. God has a plan and I pray it's another miracle.
Update Thur, May 9, 2002 afternoon
I just heard that 2 year old Sydney needs a miracle. Please pray for her and her family
Update Sun, May 12, 2002
Day 175... Happy Mother's Day Nancy. You have such a great mother through these difficult past 8 months. Samantha is doing good. She is so full of energy. She got brave and threw a chocolate whipped cream pie. And what a team she makes with Ken to cover Aunt Cathy with silly string.
I have to share something that just broke my heart today. While Nancy was getting her dressed and checking her GvHD rash, she noticed the rash in more places. Nancy said something like "oh now, there's more rash here". Then she would find more and say it again. Sam said "I'm really sorry Mommy". Nancy had to remind Sam that it is not her fault. Sam thought she had done something wrong by having the rash. I am getting teary-eyed just thinking about what goes on her mind.
On a great note, my Relay for Life team raised another $600 this past week, with a bake sale and a yard sale.
Please please keep praying for little 2 year old Sydney. The prayers are working and miracles are happening and although the doctors are not giving hope, they are seeing tiny babysteps toward this miracle !
I pray for all the Mom's who have lost their little ones and for all the Mom's winning their battles or fighting hard.
Here's Sam and Matt with Matt's birthday Thomas piniata that they made ! Check out all that hair.
Update Wed, May 15, 2002
Day 178... Samantha is doing pretty good. The other day, her GvH rash was so bad and they had to go back inside to get cream. Sam and Matt are really enjoying doing crafts, coloring and writing a new book for the bone marrow unit. They are also having fun learning sign language. Sam can sign the entire alphabet. She loves it too.
Special prayers go to baby Ryan who is having all kinds of complications. And for little Sydney who is stil struggling so much in PICU. And for a few of the other little ones who are battling pretty bad GvH. And other special prayer for a relative.
Update Sun, May 19, 2002
Day 182... Samantha continues to do great. They go back to Duke in a week for the 6 month follow up studies. I pray so hard that all the tests come out good showing Samantha is still in remission. That's all I want for my birthday and Christmas for the next 100 or so years. Nancy and Ken still have to be very cautious with Sam for quite some time until her immune system is back. It's so hard to remember that just 6 months ago she had an UNRELATED donor cord blood stem cell transplant. It's such a miracle that they can do this.
Special prayers go out to the families that are battling so very hard now, especially Sydney's and baby Ryan's. And for a friend of mine who's husband had a sibling transplant a few weeks before Samantha. He is now struggling for his life after doing so well the past 6 months. For little Brandon who will have his tranplant this week and for another friend Ivette who will have her sibling transplant in a few weeks.
Thanks God for my wonderful family and friends !
Update Thurs, May 23, 2002
Day 186... Samantha is really doing great. She has issues like some dizzy spells, belly aches and GvH rash, but she's a trooper. The kids love the new Brenner Children's Hospital. It's so spacious and there is a separate pediatric onocology clinic with special reverse air filtration that even allows Sam to not have to wear her mask in there ! Matt begs to go to clinic. So the clinic visit that was an extra 30 minutes longer for the kids to see "their" helicopter is now turning into an extra 2 hours. I am so thankful they can make fun out of such a terrible experience. It would be really really great if we could get a whole bunch of people to run the Brenner Children's Classic 5k in August. Ken has already committed to run it with Aunt Cathy.
So now the news, they will be at Duke all day Monday for the 6 month studies and the surgery for the central line is less than 2 weeks away. We need prayers for Samantha, 5 year Brett and 2 year old Garrett that all their 6 month studies come out ok.
And the most awesome miracle, I heard Michael Miller was released from the bone marrow unit this week. Just 4 weeks ago, he was in PICU and given less than 24 hrs to live. God is really listening to prayers ! Baby Ryan and 2 year old Sydney need special prayers too.
Update Mon, Jun 3, 2002
Day 197... Sorry, but my internet provider has had the site down. It may be unstable until I get it all back together. They have caused me a LOT of work. Anyhow, Sam is doing great. She is getting ready to have surgery to have her central line taken out - thank you God ! And best news is that her 100 day tests came back showing 100% donor cells - meaning she is still in remission. Thanks again God !
By the way - have you heard Samantha lost her 1st tooth ? And yes, she has a new tooth behind it. She did not bleed much but did have to go on antibiotics just in case. It's amazing how just losing a tooth can make me thank God for her progress.
Please say special prayers for my uncle with leukemia. Also prayers for 5 year old Brett. He had his transplant 9 days before Sam and had his cental line out last week. He is back in the hospital and it may be GvHD. Special prayers to baby Ryan who has made a miraculous turn-around and for 2 year old Sydney who is making miraculous baby steps. Both are still on a ventilator.
Our local Relay for Life if this weekend, Fri and Sat. There are over 100 luminaries for Sam - thanks so much. Hopefully there will one day be a cure and no one will need a transplant. Visit that website I did at Watauga relay
Update Tues, Jun 4, 2002
Day 198... The most awesome miraculous news - Samantha had surgery to have her central line taken out today. Wow !
And great news, 5 year old Brett is out of the hospital. He does have GvHD that can hopefully be controlled. And there is more miraculous news that baby Ryan may check out of the bone marrow unit in a few days - just days after they did not expect him to make it. God is surely giving us miracles !