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Wednesday, September 26, 2007 11:25 PM PDT Welcome!!
Sofia had her checkup two days ago and she is doing GREAT! I was a little worried as she has been tired, had two bloody noses, a few bruises and dark circles under her eyes. Looks like the bloody noses must just be a Pantis thing (Andreas gets them often in air conditioned environments) and the fatigue and dark circles under her eyes are from her first experience with full school days. She is now a big 1st grader!!
Now that I am not worrying about a relapse everything is going great again.
I did not post all Summer so I will give you a quick recap. We started off with one month in Greece with Yianni's relatives. We all had a great time and the kids and I were able to improve our Greek language while there as well.
Then, we were home for only a few days and Andreas went away to Camp Okizu for a full week...by himself!! I was so proud of him for being away from his family for so long. This is the camp for cancer kids and their families. So, all of the kids at camp with Andreas also had a sibling with cancer.
Both kids attended other day camps throughout the rest of the Summer to give me a few hours to work each day. They went to science camp and nature camp.
Then, back to school at the end of August. For the first time ever they are now in the same school together. Sofia is in 1st grade and our big guy is in 4th grade. So far so good! It is a great school and Sofia already has a couple of friends in her new class and Andreas is already doing well in his class.
Hope all is well with all of you. Please drop us a line and let us know how you are!
Kelly and family
Saturday, March 10, 2007 8:57 PM PST _____________________________________
April 11 update:
4 weeks of training left! I ran a 12 K from Sausalito over the Golden Gate bridge to the Embarcadero a few weeks ago and loved it. Did it in under 2 hours even with all of the hills. However, I had a slight ankle injury a couple of weeks ago but am starting back up training this week. I am sure I lost a little speed and endurance with my break in training but that is OK with me. So long as I finish I don't care how long it takes me!
Sofia is still doing great. The whole family is going to Vancouver B.C. with me for the half marathon and we will get to visit many of Yianni's Canadian relatives while we are there.
Thanks for checking back in! kp
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Hello friends and family,
Sofia just had her bi-monthly blood test and check up...she is healthy and clear of any leukemic cells and 15 months out of treatment now! We are so happy and thankful.
In support of the Leukemia Society and in appreciation for all the medical community did for our Sofia I am running a half marathon May 6. I hope you will support us and the Leukemia Society by making a donation via the link on the page, just above. Any amount is appreciated - large or small :-) It all goes to a wonderful cause!
Sofia is an official honoree for the race and has been able to meet all of the runners and participate in many of the events. She is the youngest honoree in the Sacramento chapter and has made many nice new friends from Team Sofia II.
I am also running in memory of our good friend Jules Loventhal who left behind a wife and son. His son is just three days older than Sofia. We also know many others still fighting cancer today like Jennifer, Roxanne and Culien's Dad (Culien ran for Team Sofia I back in 2003 when Sofia was first diagnosed). I run for these courageous people as well.
Please drop a note in the guestbook and visit the donation site on your way out and check back for updates each month.
Much love,
Kelly, Yianni, Andreas and Sofia
Monday, January 22, 2007 10:08 PM PST Happy New Year!
This Holiday season marked one year off treatment for Sofia. It is amazing how fast that year went by! The only residual effects we are aware of are a few lingering "chemo acne" red bumps around her chin. Her hair is long, wavy and thick now (thicker than mine!) and she is thriving in Kindergarten with perfect report cards and lots of friends. She is growing fast and very tall so the chemo does not appear to have stunted her growth any.
We are so thankful.
As I promised after Sofia was diagnosed, I am now actually going to walk/run a marathon with the Leukemia Society's Team in Training!!! Well, at least the half-marathon for starters :-) We are going to make this Team Sofia II (my childhood friend, Michele, created Team Sofia originally in 2003 and 14 ladies ran in Sofia's honor).
One of my closest friends, Betsy, and her husband are going to join me. If any of you want to walk, jog, bicycle or do a triathalon as part of Team Sofia II please let me know. It would be great fun to get a bunch of us training together, getting fit and raising $$ for a good cause. There are various events to choose from in the May and June time frame and the training programs start end of Jan/early Feb. There are teams all over the country so even if you are not in Northern CA there should be one in your town, too!
The rest of the family is doing great as well. Andreas has adjusted well to his new school and is making new friends and getting good grades. He just started Taekwondo and also decided to give Little League a try this Spring. Yianni is still working lots of hours but enjoys what he does. He is also traveling more and speaking at real estate/public record law events so it was a good time for me to scale back my travel and work. I work only a few hours per week now with a very flexible schedule. So, of course, I have already filled up my open time with lots of school volunteering, house/remodel projects, taking a Greek language class and now the 1/2 marathon.
The remodel is almost done. They are just finishing the bath tile and starting to install the plumbing fixtures. The painting is done so then they put in the hardwood floors, and...we move back in! The exterior is finally done so we have a roof, new stucco and a new front porch. It is nice to be able to use our front door again :-)
Hope you and your families are doing great. Please drop us a line as we would love to catch up.
And, if you are interested in Team Sofia II go to wwww.lls.org (Leukemia Society site) or the Team in Training site at
http://www.teamintraining.org.
All the best for 2007,
Yianni, Kelly, Andreas and Sofia
Saturday, October 21, 2006 11:22 PM PDT
Hello all,
I am happy to report that all is well in the Pantis home (I knock on wood as I type this). Sofia has been off treatment for almost 10 months. Her treatment seems like a distant memory now and there are many times when we feel like this never even happened to us. We continue to pray for remission and keep Sofia's life so happy and normal.
Sofia started Kindergarten this Fall, August actually, I can't believe how early they start school now!! She is in her element having her own class, friends and routines like big brother. She is already wowing the teacher with her ability to count to 100...even 900 now! She is reading quite a few words and beginning books and she is definitely on the road to being the teacher's pet! She is quite the little pleaser. And you should see her hair now! It has grown back with a vengeance; full, thick and wavy. We joke that she has grown-up crazy hair now. It rivals the wild hair of mine or Yianni's any day.
Andreas is also doing great. He started 3rd grade at a new school just around the corner from his old school. He seems to really enjoy it though he does miss having his old friends as it takes a little while to make new best friends. He is in his 4th year of soccer and really having fun with that and learning to be more aggressive and use his strength to his advantage. He is still our gentle giant though...just a sweetie that everyone loves.
Yianni is still working, working, working and getting involved in more law/policy making organizations related to real estate and public record data. So he will be busy for many more years to come! I am on the other end of that spectrum and greatly reducing the number of hours I work and am loving the extra time with the kids and at home managing our remodel. We hope that is done by January.
I uploaded a few new pics of the family on a bicycle ride/fund raiser and some remodel pics.
Please email us with your updates and news of your family!
Happy Halloween and Happy Thanksgiving in advance.
Kelly
Sunday, July 30, 2006 11:20 PM PDT We are all home from our wonderful month in Europe! The kids were great. We spent about 20 days in Greece visiting family (Yianni is Greek) and 10 days in Scotland and Ireland.
No one got sick during the trip though we all got a common cold on the return trip home which Sofia and Nana Sharon are still recovering from. Sofia is almost over it now, just a slight fever, congestion and a cough.
Andreas says he wants to live in Greece now but Sofia said she prefers to live in California and visit Europe!
I hope to go through the photos and upload some new items in the next week or so but I am busy trying to get caught up at work and home after being away so long - as you can imagine! I will have more vaca stories to share then as well.
The addition/remodel on the house is coming along quickly. It is amazing how much they did in just one month. We already have the foundations in, most of the roof off and half of the new areas framed. It is a mess here but the kids love living in a construction zone!
The kids start school in a few weeks. Sofia starts Kindergarten and Andreas begins third grade at his new school. They are each excited and we have been busy getting the new uniforms and learning the ropes at the new school.
Sofia is most excited about her 5th birthday coming up. Gotta plan that now as well. Phew...I need a vacation :0)
Hope you all have a wonderful Summer,
Kelly, Yianni, Andreas and Sofia
Thursday, May 4, 2006 9:27 PM CDT UPDATE 5/9/2006: GREAT NEWS. I MENTIONED IN THE POST BELOW THAT HER BLOOD COUNTS WENT A LITTLE WACKY AND WE WERE NOT SURE IF IT WAS DUE TO A VIRUS OR EARLY SIGNS OF RELAPSE. TOOK A FOLLOW-UP BLOOD TEST YESTERDAY, MONDAY, GOT THE RESULTS TODAY...BLOOD COUNTS ARE FABULOUS NOW. BEST THEY HAVE BEEN!! IT WAS JUST A VIRUS. WE ARE SO RELIEVED AND THANKFUL. REMISSION FOREVER...PLEASE!!!
Hello friends and family - I know, I know. I did not update the site for 6 weeks. One thousand lashings to me!
Everything is going well. Sofia had another couple of runny noses since the last March post and our heavy cold and flu season but pretty mild. The last one seems to have finally cleared up a few days ago and we are all well (knock on wood).
The sun is also shining and it is Spring! It was in the high 80s for the past week and down to the 70's yesterday and today. We might even go swimming at the gym tomorrow if it gets over 80 again?
Because of the colds and such Sofia's blood counts were just a little off. We take another blood test on Monday, May 8th just to be sure they went back to normal after the cold. Of course, we get a bit of nervousness hearing that but she has had so much energy and good color in her face that I am feeling more confident now that it must have just been the cold. I will update the site once we get the blood test results. We are being sent to a lab now instead of the Onc's office so I am not sure if I will get the results immediately at the lab - may have a to wait a day or so.
Other than that we are all enjoying the longer daylight and my additional time off (went part time a couple of months ago) and having fun. We are also planning some nice trips for the Summer. We will be in Idaho visiting my brother Kyle and his family in their new home in the woods next to a creek and to Europe to see Yianni's family in Greece and a tour of Ireland and Scotland.
On a somber note, my Grandmother La France passed away so we will also be making a trip to San Antonio for her Memorial over Mother's Day weekend. She was in her 80s and lived a full, long life. I also want to pass along my regrets to Alan at work who just lost his wife, Audrey, for those of you that know him.
Thanks for checking in and I will update this next week sometime.
Please keep praying for remission forever for Sofia and all the other children.
Kelly
Wednesday, March 22, 2006 11:57 PM PST Sofia made it through surgery with flying colors!!
She and Andreas both got sick the Thursday before her surgery so we were nervous her cough and congestion would postpone the big day but it all went smoothly after all.
We were out of the house by 6 AM for an 8:30 start time. Sofia was excited about the day as soon as she woke up, if you can believe it. We talked about it as a big adventure day and getting her port out. She wanted to read books about being sick and hospitals like "Franklin Goes To The Hospital" the nights leading up to surgery. We explained to her the differences from the stories to her surgery and she went around telling everyone her surgery was easier than Franklin's was, that she did not have to get an Xray like Franklin and other cute comments.
She got lots of prizes throughout the morning for being brave at the hospital including a purple teddy bear she calls "Purplie" or "Violet" depending upon her mood, an adorable Easter bunny with a flower dress she calls "Flowery" and a flashlight with special picture discs that project animal shapes on the wall. Mommy got her a giant Princess balloon she had been mooning over in the hospital gift shop.
Just before they took her into the operating room we were in pre-op getting a prize from the nurses and accessing her port for the last time. The medical staff all commented on how calm and relaxed she was. I reminded them she had been at this for just shy of three years so of course she was not disturbed by any of this but they all said that most kids still get upset seeing the operating rooms and such even after months or years of treatment. So big kudos to Sofia for being one of their bravest, sweetest and happiest patients!
I had them give her a little medication to make her sleepy (they refer to it as "Giggle juice") and it was hysterical. A few seconds after putting it into her port she got this big grin and glazed look and anything we said or did made her giggle uncontrollably. That helped her relax and not get upset when they wheeled her off into the actual operating room without me. For all of her procedures requiring anesthesia previously I have been lucky that the docs let me stay in the room with her and hold her and play with her while they gave her the anesthesia so literally fell asleep inmy arms and then woke with me or Nana standing over her. She never thought she left us. The port surgeries, however, are different. They require the sterile operating room and no parents are allowed. So, the giggle juice worked like charm and she did not realize she was wheeled away from me before they put her to sleep.
The only time she got upset was when she woke up in the recovery room with 5 or 6 cords stuck all over her and a respirator over her mouth because of her congestion. Luckily, her prizes distracted her once again and the promise of getting everything off of her and going home within an hour settled her down.
Mommy had a minor break down when I called Yianni to tell him everything went fine. Looking down at sleeping Sofia in recovery with all of the cords and monitors realizing Sofia would not (I hope and pray) have to do anything else like this again. It was a big milestone...the last chapter of her Leukemia. The nurse actually ran over to me to see what was wrong when I started crying on the phone so that snapped me back to my calm self and Sofia still has never seen me get upset or cry about any of this. If she only knew the gallons of tears we have all shed when out of her view.
Once she got home she got a sweet greeting from her brother and they set off playing and eating lunch like nothing had happened. I never know how much he thinks about her surgeries and medical visits. Not sure if he worries or just trusts everything is OK? Maybe he will be able to tell us when he gets older. The only time she would slow down was when she would run and pull too much on the incision or if one of us hugged her too tightly near the incision.
YiaYia came over that afternoon and brought Chinese food for dinner. A favorite!
Here is the irony...Andreas and Sofia both got sick the prior Th. Sofia just had a regular cold without any fever but Andreas had the stomach flu with a mild fever. By the day of Sofia's surgery (5 days into his flu/cold) he was still home from school and sick to his stomach with a 101 fever so Nana stayed over and watched him while I took Sofia to the hospital. Once I got home from the hospital with Sofia I laid down for an hour (I was exhausted from being up with Andreas the night before and getting up at 5 AM for the surgery) and then had to take Andreas to his doctor for an afternoon appt to get checked out...Ugghh!! And, Yianni was out of town and did not return until 8 PM or so that night. Thank goodness for the Grandmas!! I had a glass of wine to celebrate that night and slept like a baby when the day was done.
Both kids were still home recovering today, Wed, and Andreas actually got worse so I had to get antibiotics for him tonight. I warned both kids that if anyone much less both of them are ever sick for more than week I will go absolutely crazy so they better get well! Hopefully Sofia is now well enough to go to preschool for a half day tomorrow and I am crossing my fingers Andreas starts getting better tomorrow so he can be back in school Friday.
Well, this has been quite a sickie and surgery week and I will be glad when all are well and normal again. I think this entry will be fun for the kids to read when they are older! Thanks for sharing in the trials and tribulations of the Pantis family :-)
Just a note: Jules Loventhal, a long-time Pantis family friend died of cancer approximately two years ago. His son, Jeremy, was born only a week before Sofia and was only two when he lost his father. Lisa, Jules' wife, joined the Leukemia Society's Team in Training program and is bicycling 100 miles around Tahoe in June in Memory of Jules and in honor of our Sofia. If you would like to help her with a donation please let me know and I will forward info to you.
Also, Betsy and I plan to walk/run a marathon in honor of Sofia through Team in Training in the very near future. I will attend an informational meeting in May and will know more details then. So if you want to get in shape, have fun and raise money for a wonderful cause drop me a line and join us! Training will most likely start this Summer or Fall depending upon the marathon we select.
Much love to all of our devoted friends and family,
Kelly
Thursday, March 2, 2006 10:27PM PST NEW PHOTOS OF HAWAII BEHIND THE "View Photos" LINK ABOVE...
Sofia has been off treatment for over 2 months now. Her body is definitely renewing itself and ridding itself of the chemo and steroids. She has much more energy, eats less (normal amounts for a child now that the steroids are out of her system). Even her hair is growing in softer and evenly while the wiry friz disappears.
She is just about finished with her two month antibiotic medicine and steroid cream treatment to get rid of the rash/bumps left all over her face from the chemo. There are still little bumps here and there so we go back to the dermatologist shortly to make sure it will stay away this time.
Sofia has surgery to remove her port-a-cath on March 21st. The port is a small round metal disc implanted in her chest (about the size of a quarter) which is attached to an artery near her heart. She was given chemo injections through this and they took blood samples via the port as well. The port has been very easy to care for and it has made all of the chemo and blood draws easier as they don't have to find a vein ir her arm or leg each time. We have to remove it as they cannot leave a foreign object inside her body any longer. The only negative to having it removed is that they will now have to do her monthly blood draws the old fashioned way - finding a vein in her arm. So, that won't be fun the first few months until she gets used to it. Oh well, monthly blood tests are nothing compared to what our little Princess has been through :-)
On to more exciting updates...We just got back from Hawaii and it was beautiful!! I plan to download the photos this weekend and will post some. We split our 8 days between Kauai and Oahu. The kids swam on the beach and in the pools, walked in huge lava caves, Andreas snorkeled, Sofia made sand castles and we all lounged and had a great time.
It is supposed to rain for the next several days here in Sacramento now that we are home so the kids keep saying they want to live in Hawaii so they can wear shorts and swim everyday. We keep telling them it will be hot here soon enough!
Thanks for checking in. I will update the site again after Sofia's surgery.
Kelly and family
Tuesday, December 27, 2005 9:43 PM PST HAPPY NEW YEAR!
Hello to all of our wonderful, faithful friends who are still checking Sofia's site!
We did it...Sofia made it through her final dose of chemo on Dec 21 and on Dec 22nd completed her final spinal (LP) to test her spinal fluid for Leukemic cells and bone marrow test to check for Leukemia cells there. We probably won't get the results back until approx Jan 3rd but are only expecting positive results of healthy white blood cells and no Leukemia!
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UPDATE 12/29 - TEST RESULTS ARE IN...NO LEUKEMIC CELLS PRESENT!! Thank God, thank you all for your positive thoughts and prayers and thank you to our wonderful medical team at Sutter Memorial. Her ANC is also up to 3000 (from 1000 last week).
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Jan 21, 2006. 30 days off treatment and Sofia has high energy, lost the steroid appetite and is doing great! She went crazy with her Xmas face painting set today - Mommy is finding new talents she didn't know she had!
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Back to the original post from 12/27:
This last procedure went extremely well. Because it was three days before Christmas both the oncology clinic and the hospital were giving each child a stocking full of presents which made it fun for Sofia. Then, as Andreas was out of school Daddy brought him down at 12 noon so she had all four of us there as she waited without any breakfast or lunch for her turn for the procedure. Andreas even received a stocking full of gifts!! The procedure went smoothly with "Speedy" Lee as they call Dr Lee. Procedures have never gone more quickly - we are so thankful he started doing them a few months back. And, as she did not receive any chemo in her spinal fluid this time, she woke up happy and never felt bad as a result of the procedure.
She actually did have a drop in her ANC to 1000 which is pretty low, though not quite Neutropenic (500 or below) so we still have to keep her pretty much home until her body starts to rebound from these 30 months of chemo. She has had congestion but no fever so we hope that goes away on its own here shortly.
We had a wonderful Christmas Eve dinner here at the house with Nana Sharon, Yia Yia Maria, Theo Paul and Thea Evangelia - cozy and mellow. Then we had a wild and fun Xmas morning and brunch here as well with the same family and Grandpa Cary. The kids got their wishes from Santa (a tether ball set and Hide-N-Seek Haley doll I had to bid for on Ebay to get in time!!!) and they still have not had time to play with every new gift and game. Spoiled, spoiled, spoiled!!!
The highlight for them both was going to Theo Niko's house Christmas afternoon for dinner and playing with their family and cousins on Yianni's side: Courtney, Nicko, and Zoe. Sofia was having so much fun she cried when we left. She is looking forward to getting to play with children more often and make more friends her own age (and more girls!) instead of just Andreas' friends.
What's next? Well, the docs said the chemo already in her is still working to keep the Leukemia at bay so we cannot give her vitamins or anything to boost her immunity and health until 1 month from the final procedure; Jan 22. At that point her ANC counts should remain fairly high and continue to get better as she gets stronger. After 6 months they said most of the chemo will be out of her body. Hoorah!!!
Sofia gets to start preschool 2 days per week on Jan 10 and gymnastics once per week as well. We are going to start her out slowly as she still tires easily and has the leg pains that triggered this whole thing if she exerts herself much. She also still needs to have the surgery to remove the Port-A-Cath from her chest. We are holding off on this a bit as she still has to go to the onc clinic once per month for blood draws to make sure her counts are normal (i.e. check that the Leukemia still is gone). Once the port is gone she will need to have blood draws from a regular needle in the arm and I am not looking forward to that for her sake.
One year after being off treatment we move her to check-ups/blood draws once every two months, the following year once every 3 months and so on until she reaches an every 12 months check-up. She will continue those until she is 21.
I am told the chances of her staying in remission are 85nd that every year the probability of her sustained remission increases until the 5 year anniversary of her last treatment which should render her the same odds of getting Leukemia as any one else.
Once again, I cannot thank all of you enough for your positive thoughts, prayers, kind gestures, Team Sofia efforts and posts to this site. Those of you that helped out with kind deeds way back in the beginning have not been forgotten: watching Andreas while we were at the hospital (even letting him spend the night and coercing you to let him stay up late watching videos until you two passed out!! - you know who you are), stopping in at the hospital to deliver a smile and encouragement, the gifts and cards that poured in, the sincere emails and phone calls. We remember them all and appreciate every one. I tried hard to get a thank you out to each of you at that time and only hope you have forgiven me if I missed anyone as I know a lot slipped through the cracks at that time.
I heard from a lot of other cancer parents that you find out who your friends really are when your child gets this sick. Many of them had friends disappear or act strangely, employers fire them or give ultimatums and they just did not receive the support they had hoped for. I am proud to say we did not experience that; much the opposite. Everyone has been so wonderful I cannot express properly our gratitude to our friends, family, coworkers and our employers and clients who have been the best through this whole ordeal. Thank you.
I will post a note in a week or so when I get the final test results, in a couple of months about the Port removal surgery and then I hope to upload new photos and info every 2 or 3 months as a way to stay in touch even though her treatment will be complete.
I will constantly think of and pray for those babies and children on the 6th floor at Sutter Hospital and all of the other cancer kids out there. I hope to find a way to help out that community more in the very near future.
Please continue to pray for Sofia's health and remission and for all of the other sick children out there as well.
Our heartfelt wishes to you and yours for a healthy, happy and prosperous 2006.
Much love,
Kelly, Yianni, Andreas and Sofia (Nana Sharon, Yia Yia Maria, and Thea Evangelia, too!)
Tuesday, December 6, 2005 7:31 PM PST Merry Christmas and Happy Hanukkah!
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UPDATE 12/12/05
The spinal procedure went really well on 12/8. This time, however, she is taking a long time to rebound. Normally Sofia is ready to get out and play in a day or two and we are trying to hold her back until her immunity is back but this time she only wants to be home, generally curled up in Mommy and Daddy's bed watching (you guessed it) SpongeBob. Even the steroids are having a delayed reaction. She would normally be eating everything in site after 2 days of steroids but her appetite is very low and she is just now starting to even ask for a meal at day 5. She also still has a head ache, tummy ache and wobbly legs according to our little trooper. I am hopeful she will start feeling better in the next day or two.
Good news - the steroids are clearing up her face rash!
Only 10 more days of chemo...we are counting them down :-)
kp
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Sofia is in her last few weeks of treatment. It is hard to believe we are almost done. I still remember the day she was diagnosed when the doctor said that she had great survival odds after a 2 - 1/2 year treatment. At that time I could not conceive of how she or we could ever make it through that long period of time. Well, we are almost there!
She had a slight set-back a couple of days before Thanksgiving when she came down with Croup out of nowhere. At 2 AM she awoke gasping and crying out - almost unable to breath. After a few minutes we realized she was not getting enough air and we couldn't do anything to help so we called 911. They took us to the ER via ambulance and she received some respiratory treatments, steroids and antibiotics which worked miracles. By 6:45 AM she was like new. I have never seen such a dramatic turn-around in such a short period of time. They said Croup is a virus that does not usually effect a 4 year old that severely, just infants. However, because of her weakened state she reacted more like an infant.
After that episode we were able to keep our Tday plans on track and went to Lake Tahoe with about a dozen other family members from North Carolina and Utah. We had sunshine the first day, then some rain and the first snow of the season on the third day. We all had a great time.
Now, Sofia is healthy and only has the face rash that won't seem to go away. It is from the chemo and there does not seem to be much we can do about it. Hopefully it will go away soon.
Sofia has her chemo spinal/LP w/methotrexate Th 12/8 followed by one final week of steroids and an additional week of her standard oral chemo. Yahoo!!! Then, her last spinal is on 12/22 which will not involve injecting any chemo in her, just aspirating her bone marrow from her pelvic bone to verify that there are no leukemic cells present.
Please pray, send positive thoughts, wish or use whatever form you prefer to make sure she gets a clean bill of health.
Sofia has been anxious to start pre-school, gymnastics and ballet and we already have her all signed up to start these in January. Then she starts Kindergarten in the Fall. She is so excited to participate in everything.
She will have to have one final surgery in Jan/Feb to remove the port-a-cath from her chest but we don't have that scheduled yet. It should be an out-patient procedure.
2006 will be a wonderful year.
Wishing you and your families a wonderful Holiday,
Yianni, Kelly, Andreas and Sofia
Sunday, November 6, 2005 10:16 PM PST It is Fall!
Sofia is enjoying the cooler weather and falling leaves that crunch under her feet. She keeps waiting for more rain though so she can put on her boots and stomp in the puddles.
She is doing very well. After her spinal/week of extra chemo and steroids in September she did get a recurrence of the diabetic issues she has had the last few treatments, but it was not any worse so that was a relief. After a week or so she was processing sugars normally again.
The only issue we have now is a large number of red bumps on her face around her mouth, nose and chin. We have been trying to get rid of them for a month now and they just keep getting worse. They have popped up off and on throughout chemo but this is the worst they have been. Hopefully our doc can come up with a new treatment at our appt this week.
The kids had a great Halloween. We made our annual pilgrimage to Davis for trick-or-treating with Andreas' Nouno (Greek godfather) and his family. Sofia was a fairy with wings and a wand and all of the girlie flair and Andreas was a formidable Darth Vader. Sofia had a great time even though she was the only girl among three rowdy 7 and 8 year old boys.
Our personal computer is disconnected while we rearrange our family room/desk but I will get the Halloween photos uploaded soon!
The kids also got to go to San Francisco for the weekend during an annual Realtor Convention I attend each year. It was great for the kids to get to meet my coworkers and clients. As I work from home and take plenty of biz calls from my cell when I am out and about with the kids they get to know the names of these people and always ask when they will meet my business associates. So, now they have met almost all of them...including my boss! I also have them trained to recognize the First American eagle and logo...company kids!
I cut my hours back a bit over the last few months so I generally work only 30 hours/week. Fridays are my special days with the kids and we have a great time. I try not to work or take biz calls on that day. Sofia now asks me daily if it is a Mommy work day or a Mommy day off. Of course, she pours on the drama and sad eyes when I say it is a Mommy work day but lights right up when she sees Nana walk in the door to play with her.
We plan to be in Tahoe for a few days over Thanksgiving with the Pantis and Garrett families including my sister-in-law Jill's parents from San Diego. Should be lots of fun and the kids are excited about seeing their cousin Jordan. We are still only two hours from the hospital in Lake Tahoe but I am a bit nervous about anything going wrong while we are up there so we will keep her in a bubble a week prior to the trip so she will hopefully not be sick while we are there.
Repeat from last month's post - Final treatments in Dec:
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Her final big quarterly chemo procedure (chemo via spinal, orally and a week of steroids) should be in early December. Then, a week or two later she will undergo anesthesia and a spinal/lumbar puncture again, but this one is for a bone marrow sample to confirm that there is still no sign of those Leukemic little buggers. We appreciate all prayers and positive thoughts for this big day...as you can imagine!!
The doc said she could get her port-a-cath removed from her chest as early as Jan or Feb so we will wait and discuss that in more detail after the first of the year. She will still have to get blood draws each month for several months after her Dec treatment so she will have to get blood drawn from her arm after her port is removed. That makes us hesitant to remove the port until her monthly appts turn to every-other-month just to spare her the discomfort.
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This is going to be a wonderful Holiday Season for our family with much to celebrate.
Thanks again to all of you for your continued thoughts and prayers.
Kelly and family
Thursday, September 15, 2005 10:31 PM PDT
Sofia is 4!!!
Sofia turned 4 yesterday and had her smoothest spinal/lumbar puncture big chemo procedure yet today. Only one more major spinal treatment left. What a great week!
Sofia had a wonderful time at her birthday party last weekend. She had a bounce house, water balloon toss contest, lawn games and a Dora pinata (to Daddy's dismay as he hates the concept of pinatas "beat the $%#* out of something and get rewarded with candy" he always says!).
She had so much fun playing with her cousins, Andreas's friends and our family friends. She was on cloud nine!!
I can't wait until next year when she will have been in pre-school and starting Kindergarten so she will have her own friends her age to add to the mix!
This morning Sofia went without breakfast (fasting for the anesthesia for her procedure) like a trooper and went to the hospital for her second-to-last big chemo treatment of Vincristine via her port and Methotrexate via lumbar puncture/spinal. Luckily, this time she willingly drank lots of clear fluids for breakfast so I think she felt more full when the lunch time hour came around and she still could not eat. I told her we were going to make experiments for breakfast and that is one of her favorite new words so she was immediately interested in this new breakfast idea. And, Sofia says "experience" when she is trying to say experiment...so adorable ;-) She helped me figure out items she could eat which were made of clear liquids and had chicken noodle soup broth, cranapple tea and apple juice.
Then, once at the hospital she was greeted by the always so friendly hospital staff and everyone she saw asked her all about her birthday and gave her loads of attention and love. They are just so wonderful at Sutter. To top it off they started the procedures right on time around 12:15 and we were only 4th on the list so she was in by 1 PM or so. Much better than waiting until 2 or 3 PM on an empty stomach. She only started to ask for food as we were on our way into the treatment room. So, no tears or hunger pangs this time. Hooray! We will try to repeat this easy experience..."experiment"...again next time :-}
Sofia starts her week of steroids tonight as well so we are not looking forward to the return of her voracious appetite. But it is a small price to pay for remission. I tried to explain to her that it will just be the medicine making her think she is hungry but it seems to be difficult for her to ignore her hunger pangs and she still wants to eat everything in site...all the time!
Her final big quarterly chemo procedure (a repeat of what she got today including the spinal and week of steroids)should be in early December. Then, a week or two later she will undergo anesthesia and a spinal/lumbar puncture one last time, but this one is for a bone marrow sample to confirm that there is still no sign of those Leukemic little buggers. We appreciate all prayers and positive thoughts for this big day...as you can imagine!!
The doc said she could get her port-a-cath removed from her chest as early as Jan or Feb so we will wait and discuss that in more detail after the first of the year. She will still have to get blood draws each month for several months after her Dec treatment so she will have to get blood drawn from her arm after her port is removed. That makes us hesitant to remove the port until her monthly appts turn to every-other-month just to spare her the discomfort.
I will only post to this journal again if we get new information or have new photos and fun events to talk about like Halloween and such. Otherwise, I am starting to wind down our use of this site as we look toward a fresh new year for Sofia in 2006.
Expect another post after Halloween with photos and I will upload her bday photos in the next week.
Happy end of Summer and God Bless!
Much love,
Kelly
Monday, August 8, 2005 11:30 pM pDT Happy Summer!
Sofia is doing great. After some ups and downs in June and early July we are happy to report a wonderful last few weeks. All of the prior fevers, low white blood cell counts, blood transfusion, diabetic issues, etc. have cleared up and Sofia has been strong and energetic.
The whole family spent the weekend in San Francisco last weekend and the kids had a great time. We stayed 2 blocks from Fisherman's Wharf and walked on board an old Ferry boat and a tug boat at the Maritime museum, played early 1900 "fun house" games at the new Musee Mechanic (not sure if I spelled that correctly) and road the cable cars. They loved the fun house museum. I highly recommend for ALL ages - just bring lots of quarters!!
Andreas' various summer day camps are over now so we have a couple of mellow weeks left to play and lounge around before school starts back up on 8/22.
We are going camping for a couple of nights on the coast next week. It will be the first time the kids have gone tent/car camping. Our prior camping trips have been in cabins with meals cooked in a kitchen/cafeteria. I think they will really enjoy cooking over a campfire and sleeping in a tent. If I am wrong we will be coming home early :-)
Sofia turns 4 on Sept 14 and her quarterly big chemo treatment is Sept 15 so we are going to have her bday party with a small group of friends a week or two in advance of her actual bday. That way we are hopeful she won't be around any germs or coming down with any virus or bacteria as she undergoes the big treatment and the week of steroids.
This is the second to last big treatment. Last one should be in December.
I just keep pinching myself that Sofia is getting so close to the end of her chemo. Just over 4 months left!!!
Thanks to all of you for keeping Sofia in your prayers and staying positive.
Happy end of Summer...
Kelly and family
Tuesday, July 19, 2005 10:03 PM PDT Happy Summer,
Sofia is doing well now. We have had a few more ups and downs but all has been smooth for about a week now. Once we got past the diabetic type reaction she had to steroids several weeks ago her counts dropped down to neutropenic levels unexpectedly (no immunity). We decided to cancel our family vaca to Hawaii which was scheduled for two days later as we did not want to take any risks.
Well, later that night she spiked a 103.7 temperature and the doctors had us admit her to the hospital right away as she had no immunity and they wanted to get additional antibiotics in her via IV as well as run a culture on her blood. So, we ended up in the hospital for three days. The kids were good-natured about having to reschedule our trip to Hawaii for February when she is done with her treatments. They picked a trip to closer San Francisco if/when Sofia's blood counts are stronger next week.
Yianni still went to Hawaii but shortened the visit for only the business meetings he had to attend. Once Sofia was stabilized I even made it out for two nights while the Grandma's took turns watching the kids. Thank goodness for family!
We are hoping for an uneventful rest of the Summer without fevers or getting neutropenic and are trying to stick to only outdoor activities so Sofia is not exposed to as many germs. However, it has been hot here and will be over 100 degrees all week so outside fun is limited at times!
Hope you are all enjoying yourselves and staying cool in your part of the world.
Remission forever!
Kelly
Sunday, July 3, 2005 3:27 PM PDT Happy 4th of July!
Sofia is doing great. Our plumbing leak/mold issue is now behind us and Sofia's and our coughs are gone. Just a little tile work left in the bathroom and we will be back to normal from that incident!
Once the mold scare was behind us (see prior entries re: concern Sofia had fungus in her lungs and the CT scan) it was time for the next big quarterly treatment. She had her methotrexate chemo via LP (spinal) and vincristine via IV along with the always exciting week of steroids. She did really great. This time she did not have to wait too long for her turn for the spinal which was nice as she cannot eat all day until the procedure is complete and she wakes up from the anesthesia.
She did not seem to feel the puncture in her back this time after she woke up. Maybe the Dr. this time (Dr Lee) did a better, smoother job than the last one or maybe it was just she was focused on other things. Not sure.
We did get a new wrinkle this time, however. About 5 days after her treatment and taking steroids every day we noticed she was drinking quite a bit more than usual. She was restless during her naps and had to sleep on one of us. Even then she was not always able to actually sleep, just resting a bit. My Mom thought we should call the doctor as this was not normal. I hoped it was just the heat of the Summer coming on making her thirsty but instead she did have too much glucose in her urine and was moving towards diabetic and needing insulin. After additional lab tests they found that though her glucose was high she did not have the ketones (spelling?) that would have required us to troop back to the hospital for insulin. Thank God.
The doctor said it was caused from the steroids and should correct itself if we removed all carbs and sugars from her diet and kept her drinking lots of fluids. Well, holding back on apple juice, pasta, sandwiches (bread) and cereal is no easy task. Especially for a 3 year old on steroids who wants to eat like a little piggy. Sofia has been so good natured on her South Beach-esque diet. She just says, "I can't eat any bread or sugar" if someone offers her something she can't eat. She gets upset and frustrated occassionally but is doing remarkably well.
As of today she seems to have a normal thirst and is able to sleep better so we let her make waffles this morning for breakfast and she has been allowed a bit of fruit. We are crossing our fingers that this will be the end of the negative effects of the last big treatment so we can relax through the rest of the Summer until her next treatment in September, just after her 4th Bday.
If all goes well and she gets a clean bill of health from the Drs. this Wed we are taking the whole family to Hawaii to tag along on Yianni's business trip! Nana is joining us for part of the trip as well.
Happy Summer to all of you!
The Pantis family
Wednesday, June 1, 2005 11:52 PM CDT Great news...Sofia's CT Scan showed no fungus or mold in her sinuses or chest. Relief!! (See prior week's journal entry about the mold/leak in our home which caused the need for Sofia's CT scan).
However, it did show she has sinusitis so we will be scheduling a minor surgical procedure to clean out her sinuses to get rid of the infection. She has now had the runny nose and cough for two months and this is what caused it.
Apparently, almost all chemo kids get this condition because the chemo keeps the membranes in the body from growing and working properly so she has only 10 - 20 layers of membranes in her sinuses vs. the 80 or so layers a healthy person would have. This lack of sufficient membranes keeps them from working properly which caused the sinusitis.
Her blood transfusion from last week also worked well for her so her red blood cell and hemoglobin count is back up now. Unfortunately she had a slightly bad reaction at first and started getting a bit jaundiced. But after 3 days she was pretty much over the jaundice.
We all went up to Camp Okizu over Memorial Day weekend after getting approval from Sofia's docs and had a WONDERFUL time. It is a camp for kids with cancer and their families with special sessions for the parents and separate sessions for the kids as well as the usual camp fires, boating, swimming, etc. The bonus is that they also have docs and nurses there to make sure all the kids are OK. Great fun and we can't wait to go back again next year!
Two more weeks until Andreas is finished with 1st grade. We are looking forward to Summer!
Please send your positive thoughts and prayers for all the sick children at Camp Okizu and the cancer kids everywhere. Remission forever :-)
Much love to all,
Kelly and family
P.S. If you are interested in a worthy charitable organization I strongly recommend the Okizu Foundation at okizu.org as they do great things for not only the children with cancer but the siblings and parents having a tough time dealing with the disease and/or feelings of resentment towards the sick child.
Tuesday, May 24, 2005 12:55 AM PDT Hello all,
I realize I have not updated this site in over 30 days. It has been crazy here.
Sofia is doing well. Both the kids and I have shared a bad cough for about a month but I think we are all finally nearing the end of that one.
The biggest news around here is that we found a plumbing leak and some mold in an adjacent closet as a result. We are having to treat that seriously because of Sofia's weakened immunity system. Sofia gets a CT Scan on Wed to check for anything harmful in her sinuses or chest. We are hoping our coughs are not related to the mold. I am feeling very positive about this as she has been in good spirits, has good color most of the time and is generally high energy (just a little tired occassionally, like after the larger chemo doses on Th nights which is understandable).
We are just finishing the mold remediation and air testing phase and are now moving into the repair phase (that bathroom is half-gutted right now and not usable). So, if you are wondering why we have disappeared off the radar screen you now know why!
I will update this site when we get the results from the CT scan.
Hope all is well with everyone and please send your prayers and thoughts Sofia's way for a clear CT scan, good health and remission forever!
Thanks,
Kelly
Wednesday, April 12, 2005 10:23 PM PDT Hello family and friends,
Thanks for continuing to check up on our little Sofia.
Well, she is not so little anymore, really! Sofia is such a little lady now; bright and talkative and almost always in a wonderful mood.
She also got to move up to the big girl booster seat in the car as she just hit the 40 lb mark thanks to the recent week of steroids she just completed. Her waistline/belly must have grown by at least 2 inches this time and this was mild compared to prior doses because she was also taking decongestants which curbed her appetite from time-to-time!
Poor thing...the steroids tell her she is STARVING all the time and she will often get a belly ache from eating too much because she just can't help herself. Sometimes we try to distract her from eating and postpone the food she is asking for and she will break down into tears just sobbing for more food because she is sooooo hungry. Of course, it breaks our hearts and we try to give her some low calorie, healthy item to munch on to curb her hunger. The steroids should be out of her system in the next couple of days so she can return to her normal eating habits.
Everything else is going well. She did just great with her big day at the clinic and hospital on April 4th (methorexate via spinal/LP, vincristine via IV and week of dexamethasone for your chemo parents out there). She couldn't eat anything all morning because of the anesthesia needed for her spinal procedure and she got so hungry and tired by noon or so that she couldn't stop crying and asking for a sip of juice. The nurses felt so sorry for her that they moved her to the top of the list of 8 kids or so there and she went in first at 1 PM. Relief! She was a happy little girl again when she woke up from the procedure and did not seem to mind having it done this time. Amazing how she bounces back immediately. She did get a runny nose and congestion a couple of days later but never got a fever so we feel lucky.
Her cousins Zoe and Nicko came over a few days after Sofia's big hospital day to play and brought some yummy home made coffee cake. They have been her only playmates since the hopsital as her immunity gets pretty low for a week or so and we have to restrict her activities. She was thrilled to see them!
We go back to the clinic tomorrow for a check up. If she gets a clean bill of health we will attempt to take a quick family vacation to San Diego with both kids. Yianni has a business meeting so we are hoping to tag along at the hotel and go to the zoo and see the sights while he is in meetings. If she is not well enough we promised her we will go again another time.
A close friend of Zoe and Nicko's grandpa recently lost a teenage daughter to a related cancer after three years of battling it. Please send your prayers to her for her courageous fight and to her family for strength and peace.
Love to all of you and your families,
The Pantis Family
Friday, March 25, 2005 10:18 PM PST Hello,
Sofia had a fever of 100 - 102.5 for four days and seems to have finally gotten over it as of yesterday. Now, however, she says she has a sore throat. We will see how that progresses tomorrow. The docs have been great about letting us medicate and monitor from home and only had to take her to the clinic once during her fevers and never had to check into the hospital. Relief!
Sofia has her lumbar puncture (spinal) and the multiple chemos and steroids on Monday, April 4 so please send her your positive thoughts and prayers for minimal side effects and a safe procedure. I counted the number of lumbar punctures remaining incorrectly (too low) in a prior post on this site. After April's procedure she will have 4 more before her treatment is over. Yeah!!!
We had some sad news in our family last week. Sofia and Andreas lost their Grandpa Lar (Larry Garrett, my dad). He died peacefully in his home. It has been a hectic and emotional 10 days. We had lots of family here at our house and at hotels. The kids had a wonderful time with cousin Jordan and all of the relatives, as always. It was a bit of a different experience for the adults, of course.
On to brighter thoughts.
The kids and I are going on an Easter Egg Hunt at Carmichael Park tomorrow morning. They always have lots of fun there. We get to celebrate two Easters this year as the Greek Easter falls on May 1!!
Much love to all,
Kelly
Sunday, March 6, 2005 9:58 AM PST Hello friends and family:
Sofia picked this new turtle theme today to celebrate our warm (70's and sunny) Spring-like weather. We all went to the park and fed the ducks today!
Sofia is doing well on her current chemo treatments. She is also gaining weight like a healthy 3 year old so because of both of those positive factors they increased her daily chemo intake (a pill called 6MP) by 50 percent every other day. The goal is to give the child as much chemo as she can handle without suffering too much negative consequence to make sure all of the little leukemia buggers are kept at bay.
She also got a bad cold/cough about 3 weeks ago and after a week it started to get better only to be replaced by another nasty cough/cold and that seemed to be almost better last week when she got a runny nose cold and slight cough. She seems to finally be at the tail end of this 3rd cold in a row. I am hoping there is not a 4th cold lurking in the wings. I am sure that the chemo increase (which took effect a few weeks ago as well) is part of the reason her body is having a hard time getting well and fighting off other germs she is exposed to.
Sofia is getting a bit bored and sad as she has not been able to go to church/Sunday school in three weeks or go to dinners with friends, etc. Even with her very limited exposure to other people for several weeks she still keeps catching colds!
I have been looking into pre-school options for her this Spring when the weather is nicer and there are fewer colds being spread. We are hopeful her previous school will be able to fit her back in. It is the same pre-school that Andreas went to and we just loved it. They are also understanding of her condition as she had just started attending before she was diagnosed. They are comfortable letting my mom or me stay with her in school to keep her hands clean, etc.
Andreas is also fully recovered from his hernia surgery 2 1/2 weeks ago. He is riding a bike already and playing normally (so much for the 3 week recovery period). Even the incision itself already looks months old and healed.
Amazing!
I have decided to only update this site every 3 - 4 weeks (or when something newsworthy happens) as I am not sure how many people are checking in regularly anymore. Her next big quarterly chemo treatment (the triple: spinal, steroids and IV doses) is in April so I will report back in a few weeks when that date is scheduled.
Thanks to all of you for your continued support.
Love,
Kelly and family
Monday, February 21, 2005 7:38 PM PST Thanks for checking in on the Pantis family.
Sofia is doing quite well. She is still getting over a nasty sounding cough (she sounds like a 40 year old smoker with that strong hack) she has had for about 10 days now but the doc says it is not in her chest so we are not too concerned with it. As of this evening she seemed a little whiny and I came down with a sore throat and aches and so did her cousin so I hope she is not getting another cold from us on top of her cough. We will report back in a couple of weeks.
Andreas is also quite the trooper. He had hernia surgery on Thursday (2/17) and was so brave. He did not cry about it or get upset at the hospital at all. Andreas was so grown up that he just asked the doctor and nurses questions about the needle and the surgery and was content with those answers. He was VERY groggy when he woke up and was disoriented and tearful as he came out of the anesthesia. But once he was fully awake he was fine.
Andreas said he was never in any pain. He always said he felt fine and did not want any pain medication. We iced the incision the first day and I only gave him the tylenol codeine one time that first night. He was so stir crazy by day three we let him and Sofia go outside and play (no running or jumping, of course). He would ride his bike and climb a tree if we would let him!
Thanks to everyone who sent him emails and posted to the guestbook for him.
Andreas'school is out this week so it gives him a nice long recovery period though he certainly isn't resting anymore! Sofia is enjoying having him around for 10 days straight.
A friend of mine from work just found out that his wife, Roxanne, has cancer in her lymphnodes. Roxanne just finished an intense treatment of chemo and radiation for breast cancer a few months earlier (her second time with that cancer). Needless to say, she is depressed and disheartened. Please send an extra set of prayers and positive thoughts her way as well.
Wishing all of our friends and family health and prosperity,
The Pantis family
Sunday, February 6, 2005 19:08 PM PST Happy Valentine's Day...Happy Birthday Aunt Michele...Happy Birthday Andreas...Happy Birthday Nana!!
Sofia is doing just great! She is 95 ecovered from her intense treatments in mid January and then her cold at the end of January. Just a bit of a stuffy nose and an occassional cough left. Best news is we did not get admitted to the hospital with this recent cold. No fever!
Nana (my Mom, Sharon) is the one with the health issues and multiple recent doctor visits. She fell about two weeks ago while trying to walk through a construction area between our house and our home office and broke her foot. Can you believe it?? Well, after a couple of days back and forth to the ER room and hospital she ended up with a cast, wheelchair, crutches, and even a walker to use when she is standing for long periods. So, you can imagine the great invalid jokes we make at her expense :-) We are lucky she is a good sport!
As most of you know, my Mom also watches Sofia Mon - Fri while Yianni and I work from our home office and Andreas is at school. So, this has strained our child care situation a bit(and added some Nana-care as well!). This caused us to reach beyond family members to help out in our home - a first ever in our family. Luckily, a young, substitute teacher from Andreas's class was thrilled to come over and watch Sofia in the morning and help Nana with cooking and cleaning, too. She started a few days ago and so far, so good! Nana is home with her to tell her where things are and Sofia just loves playing with her new, energetic playmate.
Nana's foot is feeling better now (the pain and swelling is gone) so now she is left mainly with the discomfort and inconvenience of a cast for another 4 - 6 weeks.
Finally, Andreas will also get a chapter in the recent Pantis medical follies. He has had a Hernia for a couple of years now which has not bothered him but it is now time to correct it. He has surgery on Feb 17. As my boss replied last week when I requested more time off for family medical issues, "I want to be your family doctor. I would not need any other patients." I am lucky he has such a good sense of humor through all of this :-)
This is also a big Birthday month in our family. Happy Birthday Aunt Michele (2/1), Andreas (2/11) and Nana (2/17).
Please send email messages or add a note to the guest book for Andreas this time wishing him well. He will have to stay home laying down for a week and then can go back to school with very limited activity for the following two weeks. I know he will be a little scared and depressed about all of this so any happy notes you can pass along or phone calls would be greatly appreciated!
This time, please send your positive thoughts and prayers for an uneventful, no-complications surgery and recovery for our big, almost 7 year old!
All our best,
Kelly and family
Sunday, January 23, 2005 10:02 PM PST Cough...cough...sneeze...sneeze...
Well, it is that time of year and we were unable to miss the latest round of colds going around. Even Yianni got it this time! Andreas and Yianni got it first, then the girls came next.
None of us ever got a fever, except Sofia. She creeped up to 102 Saturday AM. Luckily, the doctor allowed us to try ibuprofen to control the fever from home. It worked this time and we did not have to check into the hospital. Hooray! She is doing great now. She and Mommy each have a lingering cough which proves bothersome at night, but that is all.
Sofia completed her week of steroids last week. My, did she put the chubby back in those cheeks in no time flat! It takes quite a few days for the feeding frenzy to subside after the last dose, so she just returned to normal eating habits in the last several days. I am not sure when she will return to her normal belly size...probably a week or two before she starts the steroids again in 9 weeks :-)
As always, Andreas and Sofia are the best of friends and that has been a blessing since we have been cooped up in the house with one or all of us being sick over the past 10 days. They have turned our kitchen into a restaurant and store, take care of the humans and dolls in a pretend doctor's office, and play Mommy and Daddy (and then Yianni and I are reduced to Big Brother and Big Sister while they call the shots). Thankfully they like the same TV shows, books and games to amuse themselves when a sniffling Mommy without a voice left needs to take a break!
We are looking forward to more healthy and sunny days ahead.
Next step: we are looking into parent participation pre-schools for Sofia this Spring when the severe cold/flu season is behind us. We feel Sofia should have the chance that Andreas had to make friends her own age and get used to the school atmosphere before starting Kindergarten. Nana or myself will be with her the whole time (at a distance) to keep her protected from snot-nosed kids putting a grubby finger in her face and such, but I think she will really enjoy it.
CALLING ALL CHARITABLE READERS: For those of you that would like to know about active Leukemia and Lymphoma Society fundraisers, please visit http://www.homeintampabay.com where Realtor John Mudd is running in a marathon to raise money in honor of his friend, Miranda, who is battling cancer now.
Thanks for tuning in! Until next time...
The Pantis Family
Friday, January 7, 2005 10:37 PM PST Sofia completed her quarterly procedure and treatment!
Today Sofia went in for her scheduled chemo via IV (vincristine) and lumbar puncture/spinal (methotrexate). She did just great!
Now that she is getting older she is more aware that she cannot eat any food before the procedure (she gets a light anesthetic) so it is tougher to keep her distracted and entertained through the morning. Luckily, she received that lumbar puncture by 12:15 so she did not have to go too long without food. Sometimes it can take until 2 PM or so to get your turn. That is not fun!
Another new revelation...she is now aware of the fact that something was done to her. Previously, she would simply fall asleep on the treatment table in the arms of Mommy or Nana and wake up an hour or so later in the recovery room with us by her side. She never knew what had happened and never got upset or expressed any pain or discomfort from the spinal.
Well, today she noticed the bandaid on the lower back and cried quite heartily. We quickly took off the band-aid and reminded her that she had a test that day and that she could eat now that it was over. Once the band-aid was off she was back to her normal self. I can't blame her for being upset about finding evidence of intrusions to her little body that she did not know about or approve! Poor, sweet thing. Luckily, we should only have four more of these in the next 12 months.
Sofia starts her steroids for one week tonight so she will probably be eating like a little piggy and acting a bit more awnery than usual. She should be a bit more tired as well and we expect her counts to drop. Because of that she will be kept home for the next week or so to try to prevent her from catching a bug.
Much love to all,
The Pantis Family
Thursday, December 30, 2004 10:46 PM PST Farewell 2004...Looking forward to 2005!!
The Pantis family had a wonderful Christmas. Everyone was healthy (knock-on-wood), happy and spoiled rotten thanks to the generosity of Santa and our friends and family. Sofia received all of the books, Barbies, princesses and dress-up items a girl could ever wish for.
Andreas got a Go cart and speeds around our driveway at 12 MPH (we share a very long driveway with a large cul de sac type area with only one neighbor so he has lots of room to zoom). That is just fast enough to make my heart skip a beat when I see him take a corner too fast!
Needless to say, I spent the day after Christmas going through the kid's rooms to pull out the rarely used toys and clothes for charity to make room for all of the new favorites.
It has been rainy and cold so the kids have been couped up indoors most of the last two weeks. Amazingly enough, they have not driven eachother crazy yet (or Mommy, Daddy or Nana). They are having a great time together while Andreas is on winter break. They cuddle up in their new sleeping bags, sleep in their new kiddie tents, play the new games and read the new books all day long (you would not believe the intricate and amazing pop-up Wizard of Oz and Alice in Wonderland books!).
Sofia starts her 24 hours on Methotrexate tonight. Then, Jan 5th she has the yucky quarterly chemo via lumbar puncture (spinal), the steroids and the vincristine via IV. We are always a bit nervous before that treatment because it has bottomed out her counts and made her vulnerable to some nasty illnesses previously. We will be limiting her activity now for the next couple of weeks until that treatment is over and her counts come back up.
On the brighter side, Sofia has only one more year of treatment left! Hooray! Now that is plenty of reason to celebrate for our family on New Year's Eve.
Wishing you and yours a happy, HEALTHY and prosperous 2005,
The Pantis Family
Saturday, December 18, 2004 1:08 PM PST Merry Christmas!
Sofia is still doing great. No fevers, hospital stays or issues since Thanksgiving. We have a mellow but fun Christmas planned. The kids are off to a Gingerbread house making party today and the church Christmas pageant tomorrow. Andreas will get up on stage and belt out Jingle Bells but Sofia says she is not ready to be up on stage yet. So, she can sing from Mommy's lap in the audience this year!
We are only a few weeks from a major milestone in Sofia's treatment...
ONE YEAR OF TREATMENT REMAINING!!!!
January 5th will mark the beginning of the final phase of her chemotherapy, called continuation or maintenance, which will last 48 weeks if she does not miss any doses. On that date she will also get her quarterly nasty combo of chemo via IV, via lumbar puncture (spinal fluid) and via steroids which will continue to occur each quarter. She will also continue her daily 6MP pills but will have her 24 hours of methotrexate only once per month instead of twice per month.
Our life feels so normal again (well, almost) without the frequent hospital stays and the stares. Oh, how the little kids loved to rub Sofia's bald head. Good thing she never minded! No one would ever guess she had Leukemia by looking at her now...look at those beautiful blonde locks and those rosy cheeks!!
We pray for continued remission for Sofia and all of the other sick children, and a smooth final year of treatment!
Thanks to all of you for support over the past 18 months.
Best wishes for a happy, HEALTHY, and prosperous New Year!
Kelly, Yianni, Andreas and Sofia
Tuesday, December 7, 2004 10:32 PM PST Happy Holidays!
We had a wonderful Thanksgiving with many relatives visiting from Kelly's side of the family (brother Kyle and family and Aunt Pam and family). Andreas and Sofia had great fun playing with cousing Jordan and having new grown-ups around so they could show off and be silly!
We were all healthy through turkey day and then Sofia did get a fever over 103 so she had to go into the hospital for the routine blood culture and monitoring. Luckily she was only in for 48 hours and no bacteria showed up. I think she caught a virus Kelly was fighting off.
Everyone is doing great again now and we are keeping Sofia away from only the most important Christmas activities to try to keep her well this month. We will be home for a mellow Christmas with friends and family. Looking forward to it!
Hope you all have a safe, happy and healthy Christmas and Hannukah!
Best,
The Pantis family
Friday, November 19, 2004 8:25 PM PST Happy Thanksgiving!
I realize it has been over three weeks since my last post...10,000 lashes for me! The kids are both doing great. No cold or flu yet. We are keeping our fingers crossed for a germ-free Fall and Winter.
Sofia has a red rash on her face but we hope it will go away shortly; probably just a reaction to some of her chemo drugs and antibiotics (she takes antibiotics regularly to keep her from getting any serious infections or certain dangerous forms of pneumonia during the entire treatment).
I have been traveling quite a bit this past month but am taking some time off over both Thanksgiving and Christmas to spend at home and will be able to keep the site up more frequently. We are looking forward to the downtime of the Holidays.
My brother and his family from Utah as well as my Aunt and Uncle from North Carolina will be staying with us over the Turkey Day holiday. It will be lots of fun as my niece is 7 and gets along quite well with Andreas and Sofia. We will have about 20 here for dinner on Thursday (any volunteer chefs out there?!?!). We hope to squeeze in a day touring Napa as well - I think we will leave the kids home for that one :-)
Happy Thanksgiving to you and yours,
Yianni, Kelly, Andreas and Sofia (and Nana Sharon, too)
Sunday, October 24, 2004 7:58 PM PDT All is well on the home front here!
Sofia has been home for over two weeks now without incident. We are really keeping her home to try to keep her away from all the early season cold and flu bugs going around. Andreas came home from school early Friday with a slight cold but no fever or anything...very mild. He should be fine to go back to school on Monday.
The kids are very excited about Halloween and all of the parties they have next week. We are trying to keep Sofia healthy so she can join Andreas for the festivities. Sofia is Cinderella (the blue dress is so pretty with her baby blue eyes and blonde waves) and Andreas is Spiderman. We will make the 6th annual pilgrimage to Davis to trick-or-treat with our some of our closest friends.
Funny story, Andreas tried on his Spiderman costume including the hood that covers his entire face and head. He went walking down the hall to show Sofia and before we could tell her it was Andreas she came running around the corner and ran straight into him and screamed. Oh, the look of terror on her face! She turned and ran right into Daddy while we explained that it was only Andreas. She recovered well and thought it was pretty funny. If only we had the camera rolling :-)
Happy Halloween to everyone.
Tuesday, October 12, 2004 10:51 AM CDT Sofia is back home!!
Sofia was in the hospital from Friday until Monday afternoon due to high fevers (103 and 104) and a rapid heart rate. They still are not sure what it was, probably a virus or something?? She is getting a cough now and is a bit tired but she is feeling better now that she is home with her big brother.
Andreas got to visit her every day and she had all of the family members taking turns with her but she really hates being in the hospital now. She is old enough to know that she is missing out by being there and has figured out that she is the only one that goes to the hospital. I hope we can keep her out of the hospital this flu season.
We are limiting her activities a bit again until her strength is back. She is on limited daily chemo now and goes back to the clinic on Wed to see if she is ready to start up on the quarterly dose of steroids and the bi-monthly methotrexate.
With flu season around the corner and a shortage of vaccines I am a bit worried about Sofia's vulnerability. I am trying to get our family put on a priority list for vaccines so we can keep our home as germ free as possible. Wish me luck there! Also, we are providing hand sanitizer to Andreas' 1st Grade class and the teachers said they would help the kids stay as germ free as possible to limit the amount of sickness in the class room.
Please think positive thoughts for Sofia having a cold and flu free Fall and Winter!
Thanks for stopping by :-)
Kelly, Yianni, Andreas and Sofia
Saturday, October 9, 2004 10:06 PM PDT Sofia is back in the hospital. She had her quarterly spinal and beginning of the triple chemo week yesterday, Thursday, and had a fever of 104 by the time she got home from the hospital. It came up quickly and then went down after the doctor OK'd us giving her some Tylenol. We thought she was dehydrated from fasting all day for her spinal but then today, Friday afternoon her fever spiked up again from out of nowhere.
The doc had her come back into the clinic to run a blood culture and check her out quickly with the hopes of sending her back home for the weekend but her heart rate was high (over 170) and fever did not go down enough with ibuprofen so she was admitted.
She is sleeping soundly now, but her fever is staying around the 102 range even with ibuprofen every 4 hours. Her counts look OK (WBC 10000 and RBC is 3) and her heart rate and blood pressure were doing better this evening. Please keep Sofia in your thoughts and pray for this being just a simple virus or bacteria and a quick recovery.
We will certainly be in the hospital for the weekend. I will let you all know when she is in the clear and home.
For brighter news, feel free to browse the prior journal entries about Sofia's recent birthday bash and view the new birthday photos on this site (I have not added additional birthday photos to the Leukemia Connect2Cure site link yet, maybe next week when things settle down!).
Have a nice weekend.
Kelly
Thursday, September 30, 2004 9:35 PM PDT SEE THE NEW BIRTHDAY PHOTOS!!
Hello everyone,
Sofia and Andreas both seem to be over the back-to-back September colds...finally!
I realize I have not updated the site in about three weeks so I just wanted to drop a quick note now to let you all know that she had a perfect party for her 3rd birthday. My motto this year: what Sofia wants...Sofia gets! Scary, huh?!?
She had a big bash at our house to accommodate her request for pony rides, petting zoo (cutest 18 day old pot belly pigs, bunnies, baby chickens and ducks), big bounce house, and more games and prizes than even the big kids could keep up with! I will try to upload some photos this coming weekend and offer a few more details.
Sofia starts her Methotrexate tonight for 24 hours so she will probably be a bit tired and run down this weekend. Then, a week from today she has her quarterly fasting for the lumbar puncture and triple dose of chemo at the hospital (Vincristine, Methotrexate via spinal, and 6 MP). So, I plan to take a little time off the week after the procedure as she often has a tough time the week or two following these doses.
More later!
Hugs and kisses to you and yours,
The Pantis family
Tuesday, September 14, 2004 11:26 PM PDT Update:
HAPPY BIRTHDAY SOFIA!!! OUR BIG THREE YEAR OLD!
Sofia is so proud of being a big girl now! She got a new bike with training wheels and Daddy just finished putting it together. Andreas is so sweet - he bought her three little presents with his own money at the dollar store today.
Sofia's BIG BASH is this Saturday with pony rides, a baby animal petting zoo, bounce house, games, a SpongeBob cake and crazy amounts of fun! She can't wait. I will report back after the big day and upload photos of the event.
Ta Ta For Now...
Wed, Sept 8 11:46 PM entry...
Sorry for the delay between updates. It has been busy at the Pantis home.
Andreas caught a nasty cold his second week of 1st grade (9/1 or so)...welcome back to the class room full of germs! He was home from school for 4 days, poor guy. Of course, Sofia caught it as well. She got only a slight fever under 100 and her ANC counts (immunity) were incredibly high so we did not have to take her to the hospital.
Then, we had a camping trip planned to Camp Okizu over Labor Day weekend. It is a special camp funded by the Okizu Foundation in Novato for children with cancer. They have a family camp, oncology camp just for the cancer kids that Sofia can attend on her own when she is old enough (though she probably thinks 3 is plenty old to attend on her own!) and SIBS camp which is just for siblings of the cancer patients.
Well, we did not go up on Friday afternoon as planned in order to give the kids one more night and day to get over their colds. We drove up Sat morning and were pleasantly surpised by the resort quality of this 4 year old camp ground. The lodge was beautiful, the foothill location in Berry Creek just Northeast of Oroville was peaceful, and there were great activities for kids and parents. We all had a wonderful time until Sunday afternoon when Sofia got lethargic and a fever of 102 so we got a quick check-up from the camp doc while we packed our bags for the inevitable hospital admittance for Sofia. Sure enough, Yianni had to drop Sofia and me off at the hospital straight from camp, do not pass go, do not collect $200!
It turns out she was just weak from the end of her cold and dehydrated from her lack of appetite and unwillingness to drink much while she was sick for the week. She was put on an IV pumping fluids and antibiotics into her little body and she was feeling better immediately. However, now that she is older she does not enjoy being in the hospital at all. Poor thing was crying and demanding to go home approx every 30 minutes including a 3-hour stretch from 12:30 - 3:30 AM the first night when she would wake up to remind me that she was not happy about this.
Looking back we realize how fortunate we were that she was so young at diagnosis. She actually enjoyed her time at the hospital the first year and it was more of a treat. I hope we are able to avoid the hospital at all costs for the remaining 17 months of her treatment!
We were able to bring her home Tuesday afternoon and she is doing great now.
Enough for now...it is late.
I hope you are all doing well and we all appreciate how much you care about Sofia and our family.
Love, Kelly
Sunday, August 22, 2004 11:15 AM CDT Hello,
Sofia is having a wonderful summer!
Her counts are just where the docs want them (in the 1000 - 1300 range). She has not had a hospital stay since May and I am sure part of the reason for that is our more conservative approach of keeping her away from other children and indoor events if she had recent large chemo doses or seems tired. We are no longer waiting for her counts to drop before we shield her from these environments.
We feel bad when we are sneaking Andreas out to a fun event so Sofia is not aware that she is missing out. But, she is still having much more fun this Summer than last when we were constantly in the hospital and she was 100% quarantined.
Uncle Kyle and cousin Jordan arrived today from Salt Lake City for a short visit and the kids are having a great time together. We also took both kids to the State Fair yesterday as outdoor events are best. Sofia is not quite 3 years old yet but goes on all the rides the 5 and 6 year olds enjoy. She drives bumper cars, bumper boats and rides kiddie roller coasters...she is fearless and quite the thrill-seeker!
Andreas starts first grade tomorrow so Summer is officially over tonight!
Sofia's bday is next month and she has been planning the big day for months now. Listen to what she has already picked out: Pony rides and baby animal petting zoo brought to our house, bounce house and the theme...SpongeBob, of course! It will be a fantastic day and will make up for her lack of a birthday party last year. She just better not expect this every year!
Thanks for stopping in and please don't forget to drop a line to Sofia in the guestbook :-)
Kelly and family
Thursday, August 5, 2004 11:18 PM PDT Hello friends and family,
Sofia is doing just great again. She went in for her regular visit and her ANC (immunity/white blood cell count) was 2200...woohooo!!!! It was only 900 last week and 200 (neutropenic which means no immunity) the week before that.
Now we can all breathe a bit easier. Sofia can play with other kids some now but we will still be the germ-freaks rubbing anti-bacterial lotion on her whenever she touches anything.
This past month's big chemo treatment and low blood counts caused Sofia to begin to lose hair again. Luckily, it seems to have stopped as of this week. She lost about half of her hair so it looks thin, but she did not go bald again. Thank god for the little things :-) Her hair is just getting long enough to curl up at the edges around her chin again. We may even have pigtails in the next month or so!
I will never forget the day I read a book about Leukemia to Andreas just days after Sofia was diagnosed (she still had her long blond curls at that time). Andreas saw the picture of a bald little girl in the story and insisted it was a boy. When I explained that kids with sick blood lose their hair from the medicine he looked at me with horror and said, "Sofia is going to lose her pigtails?" It was the cutest thing. So, he will have her pigtails back soon!
I FINALLY updated photos in this site so use the link above to see some summer shots. Additionally, I am uploading photos back into the Connect2Cure Leukemia Society site as we speak. Over the next few weeks it should be back together with new photos as well.
Thanks for all of your kind words and prayers.
Much love,
Kelly and family
Tuesday, July 27, 2004 10:54 PM PDT Hello friends and family,
Sofia is neutropenic again :-(
I had a feeling that her counts had dropped so she went into the doctor without an appt last Friday and sure enough her ANC bottomed out at 200 (anything below 500 is considered neutropenic - no immunity because of a loss of white blood cells). We have stopped all chemo treatments until she is stronger.
The good news is she is acting quite happy though she is a little tired. No signs of fever or a virus so far. Keep your fingers crossed and prayers coming! Her red blood cells and platelets were OK so no transfusion necessary and they let us take her home rather than admit her so long as we promised to keep her from other kids and parties and germ-free. Thank you!!
We have had to get creative to allow Andreas to continue to go out for his activities and parties without letting Sofia feel like she is excluded. While Andreas and Daddy have a "boys day" and go to his basketball game and a picnic at a lake with some friends Sofia stays home for a "girls day" and we give eachother pedicures, create fabulous paintings and read lots of books! She has been really great about not going everywhere with her big brother. Andreas is also being extremely cooperative and does not tell her where he gets to go and understands that we don't want her to be sad about staying home. He is such a good brother :-)
Sofia goes back in for a regularly scheduled visit on Wednesday so think positive thoughts for an ANC over 500 - let's shoot for 1000!
Hope you are having a wonderful Summer,
The Pantis Family
Wednesday, July 14, 2004 9:28 PM PDT Hello friends and family,
Sofia just completed the quarterly intense doses of chemo last Thursday and finishes the week of steroids tomorrow.
_________________________
UPDATE: As of 7/15/04 her ANC was 1600 which is great (below 500 means no immunity) so she was able to go to her cousin Courtney's Bday party and be a bit more active. We check her blood count again this week to make sure it does not drop like it did last time.
_________________________
For my fellow cancer parents: She received Methotrexate via lumbar puncture (spinal) which meant fasting which she just LOVES...not! Also, oral Methotrexate every 6 hours for 24 hours including waking her up in the middle of the night for one dose(Mommy and Daddy love that...not!), her normal 6 MP every night and steroids twice per day for a week. Oh...and don't forget the nasty vincristine via IV (her port).
She is tired and needy and the steroids kicked in a couple of days ago so she is again the the three little pigs all in one little blonde package. She has a bit of a cranky edge to her at times, but not nearly as much as she used to on steroids. I think this steroid, Dexamethasone, is easier on her than the type we received the first 7 months called Prednisone.
Sofia goes back into the oncologist tomorrow to check her counts. I will not be surprised if they are low due to how tired she has been. I just hope she is not neutropenic or needing a transfusion again like last quarter.
We have 1 year and 6 months of treatment left which means we are not quite half way through this yet - chronologically. However, I thought about it more and we are more than half-over with the actual treatments. For example, she used to get these lumbar punctures (causing her to fast) 2 - 3 times per month so she has had well over a dozen of them to date. Now, she has only 4 left in the next 18 months. So, the way Yianni and I look at it we are over the hump.
My brother, Kyle, and his family should be coming out this way later in July so we are looking forward to seeing them. It has probably been a year or more since we saw them last.
And to all of you, Sofia's loyal readers and fans, I will continue to update this page every one-to-two weeks. I did not realize how many of you were still tuning in weekly, or even have Sofia set as your home page on your browser. Many of you gave me grief for not keeping up the posts when things are going smoothly here. I hear you and I am taking note :-) Please drop a note in the guestbook so Sofia can see how many wonderful people are keeping tabs on her.
On a separate note, please send your thoughts and/or prayers along to Jill C, a co-worker of mine who has shown much compassion towards Sofia and is now battling a serious health issue herself. She had surgery last week and we are all wishing her well soon.
A phrase I recently saw: Health, wealth and the time to enjoy them!
Kelly
Saturday, July 3, 2004 4:04 PM PDT UPDATE July 7: Wonderful news...Sofia was tested for immunity to Chicken Pox and she is. Hooray! We now do not have to worry about her catching it from her exposure to it from me all last week. That means she will go ahead with her quarterly big chemo treatment tomorrow, Thursday. Thanks for your positive thoughts and prayers - they worked :-)
_______________________
Original July 3rd post:
Happy Independence Day!
Sofia is still doing great. The kids went to a 4th of July parade today and had a great time.
We are going to a block party barbecue for the 4th at Betsy and Gary's. The kids all decorate their bikes/tricycle's and have a little parade to kick off the event. We went there last year and it was so much fun for Andreas. Sofia was in the hospital and we took turns with her and at the block party with Andreas. We are looking forward to all being together this year.
Sofia is scheduled to have her quarterly lumbar puncture (spinal tap) and multiple chemo drugs. This is what knocked her counts down (neutropenic), got her sick and kept her in the hospital three months ago. We are preparing ourselves for this again in case she loses all immunity again. I have schedule some time off as well to manage while she is not feeling well.
We had a new wrinkle added to our family's health today. If you can believe, I have Shingles! I thought this was an over 65 thing, but I got them. It is only slightly painful and mostly annoying so it is not a big deal for me, however, this is very serious as it is a recurrence of the dormant chicken pox virus in me and it is now making my children susceptible to getting Chicken Pox. Neither of them have had it so we are worried they may have already contracted it and are watching carefully for symptoms to appear.
I cannot touch them and have to be careful to wash my hands and not touch items the kids touch. Sofia's docs might move her big quarterly chemo visit a week or so to ensure she did not get it before they knock her immunity down. It is really difficult not to hold a 2 1/2 year old - she is still a baby and wants lots of love so she is trying to understand that Mommy has an owie and can't hold her for a few days.
Sheez...of all the crazy things to happen. Please send your thoughts and prayers our way to make sure neither of our kids gets Chicken Pox - at least not until Sofia's chemo treatments are over!
Hope you all have a wonderful holiday.
Much love,
Kelly (Shingles) Pantis and family
Saturday, June 19, 2004 9:43 PM PDT HAPPY FATHER'S DAY!!
June 10th marked the one year anniversary of Sofia's Leukemia diagnosis. I am happy to report she is doing just great. One year and 7 months of treatment left!
Last Father's Day was quite different. We were still in shock about Sofia, living in the hospital, trying to figure out a routine with both kids and determine if we could each continue working full-time. Wow, what a difference a year makes. This year Yianni will be getting the best gift ever, two kids that are happy and healthy!
Sofia's counts have remained at normal levels (for a chemo kid) for three weeks straight now and her rash is gone as of a couple of days ago so she seems to have gotten over the Parvo virus (Fifth's disease) completely. Hooray! That was a doozy.
We are letting her do a bit more now but are still cautious with her as we feel maybe we let her back into the world more than we should have. We will be more restrictive going forward and preclude most/all indoor social activities and parties to lessen the chance of her catching something that puts her in the hospital and then a quarantine for weeks on end, or worse.
We have allowed Andreas to have a friend to the house twice so long as they remained outside, primarily. And, this past week I had a quick morning business meeting in San Francisco so my mom and the kids came along and after my meeting we spent the afternoon and evening playing in the City.
We stayed outdoors, of course, with bottles of antibacterial lotion on-hand, and had a great time at Yerba Buena Gardens, Golden Gate Park on the paddle boats and motoring up and down the steep San Francisco hills. The grand finale was winding down through Lombard Street. You should have heard the kids shrieking with delight as we went down the steep hills "Ahhh...I hope the brakes work", "faster Mommy, faster." Needless to say, the exhausted adventurers were asleep in the car as soon as we crossed the Bay Bridge towards home at 8 PM.
Tomorrow, she gets to go to her first party (outdoors) in a couple of months. We are going to Theo Niko's house for Father's Day with all of Yianni's family and friends. The kids are thrilled because Nick has a wonderful pool and jacuzzi and they can see their cousins.
I am crossing my fingers in hope that these recent outdoor events do not lead to any other viruses for our little trooper.
Please keep Sofia in your thoughts and prayers...Remission forever.
Much love,
Kelly
Saturday, June 5, 2004 8:53 AM PDT Sofia is doing well. She still has her rash though it is not as severe now. It has been a few weeks now, so I am hoping it will be gone soon. We will still have to keep her out of the sun and cool as that makes the rash worse.
Due to her low counts (from Fifth's Disease virus last month), the docs suspended her chemo treatments. They just started them back up but reduced her daily 6MP to a lower dose of 25 MG. She got her strong 24 hour pulse of methotrexate (gets this every two weeks). This did knock her counts down a bit as her body is still not back to normal from her virus. She went from an ANC of 1700 last week to 900 this week (500 is the "bottomed" out level we want to avoid). We are hoping her counts are back up at next week's clinic appointment.
We let her join Andreas at an outdoor school field trip yesterday to Fairy Tale Town. This was her first outing in a month or so. The chance of her coming in contact with germs outdoors is fairly low, but we still had to take extra care to protect her. I am sure the other parents thought my mom and I were so obnoxious. We were wiping her hands with anti-bacterial lotion every time she touched ANYTHING, would not allow her to drink from public fountains or share food, we threw anything away after it touched the ground (no 3 second rule in this family any more!). We have to laugh when we think of what we must look like :-)
We have our finger's crossed that she did not catch anything on that field trip. We just really wanted to let her do something fun that wouldn't compromise her low immunity.
We have a mellow weekend planned at home. Hope you and your families are all doing well and enjoying the beautiful weather.
Take care,
The Pantis Family
Thursday, May 27, 2004 11:54 PM PDT Sofia is home and her blood counts are back up - Relief!
Sofia has had a rough 6 weeks (see prior journal entries). My last update was 5/19 when she was admitted to the hospital again due to low blood counts from the Parvo virus (Fifth's disease). She received another blood transfusion and was allowed to come home after only two days in the hospital under the condition we keep her quarantined (no interaction with kids, especially, other than Andreas).
The remaining difficulty for Sofia is a very sensitive and itchy rash associated with Fifth's disease. If she gets warm or is out in the sun it gets noticeably worse quite quickly. So, we are doing everything we can to cool her down, keep her indoors or in the shade and make her comfortable. We hope this goes away soon.
Now that her counts are back up Sofia started up on her regular chemo routine. However, they are reducing the amount of her daily 6 MP as they think the prior strong dosage (50 mg per night) might have been too much. I am glad she is back on her treatment as missing any doses makes us worry that we are not keeping the cancer at bay. The docs assure us that most every child misses some doses throughout the treatment phase and that it will not decrease her probability of remaining cancer free. On the other hand, I am worried that starting up the chemo again may knock her counts right back down.
She starts a heavy pulse of methotrexate tonight for 24 hours in addition to her daily 6 MP so we will keep her at home (semi-quarantined) for several more days until we can determine if the methotrexate did zero out her immunity.
We are feeling tentative relief and exhaustion. I am going to bed now :-)
Kelly and family
Tuesday, May 18, 2004 9:59 PM PDT Hello everyone,
************************************
UPDATE: MAY 19th
Sofia was admitted back into the hospital early this A.M. - just several hours after my last post. She had a slight fever and congestion and was crying and unable to sleep. Turns out her blood counts had dropped to very low levels again and she needed another blood transfusion which she completed this evening.
Today we also received the test results from last week's hospital stay. Sofia did test positive for Parvo virus (Fifth's Disease). This virus can hinder the healthy production of blood cells in people with chronic blood disorders. So, that is why Sofia has had continually low counts for the past week without any sign of improvement. We have been told that this should be out of her system in 6 weeks or so though some resources state it could hang on for several months. We have been told to expect her to get fevers and very low blood counts during this recovery period so we will back in the hospital each time either occurs.
The toughest part of this lengthy recovery period will be keeping Sofia away from any indoor activities outside of our home. No birthday parties or joining Andreas to friend's homes. Luckily the weather is nice so we can allow a limited amount of outdoor play activities so long as she does not touch other children or their things.
We appreciate all of your positive thoughts to help her recover quickly.
Kelly
*************************************
We had quite a scare last week (We now know Sofia is going to be fine - let's get that out of the way, first).
Sofia had a tough time after her last intense round of chemo and lumbar puncture which caused her to stop walking for a few weeks. Just when she started to walk again (albeit with a limp) she went in for her two-week clinic visit. She had been acting happy and healthy so it caught us all by surprise that her blood counts had bottomed out.
Well, the scary part was when the doctor came back into the room and pulled my mom aside, put her arms around her and said she "was so sorry" but Sofia's counts were very low and they would need to admit her right away for a blood transfusion and a bone marrow test to look for leukemic cells as this could be a relapse. The word you NEVER want to hear. My poor mom almost fainted (yes, she was alone that day without me as I was on a business trip).
After a few hours they were settled in the hospital room and the blood transfusion was under way. Sofia's main oncologist came in and when my mom inquired more about the relapse diagnosis this doc said he thought the profile of her blood counts looked more like a virus that attacks the bone marrow and not a relapse. Thank God! Well, that gave us hope that it would only be a virus but it was an incredibly stressful 24 hours until the bone marrow test and results were in - thankfully, the results were NO SIGNS OF ANY LEUKEMIC CELLS!!!
As you can imagine, the relief was overwhelming. I can only imagine what the families must go through that get the scary answer.
I came home from my trip early and the wonderful Grandmas stepped in to help with the hospital shifts. After 4 days in the hospital her ANC was still only 288 (neutropenic/no immunity is anything under 500) and her hemaglobin was 8 ( should be 11 ). However, her main Oncologist is pragmatic and quite sensible and felt if we could maintain a sterile, confined home environment we could take her home so long as we were able to bring her back immediately upon the first sign of fever or infection. We were thrilled with that offer as we agreed with him that her chances of getting an infection were increased in the hospital environment.
She went back in for her blood counts yesterday, Monday, and she was still at 300 ANC. So, she is still not able to play with other children or go on outings (outside in our yard is OK). She gets her blood counts checked again tomorrow, Wed. Please pray for increasing counts and a return to full health.
We still have not received the results of the various virus tests but hope to get those this weeks to figure out what caused this dramatic drop. In addition, Sofia may get a slightly lower dose of 6MP (her daily chemo med) once this is all over. They think she could have been getting too much.
I hope to report better news soon. I will go back to the weekly updates until Sofia's situation stablizes again.
Thanks to all of you for your concern and support. We have exceptional friends and an incredible family!!
Much love,
The Pantis Family
Saturday, May 8, 2004 10:15 PM PDT Happy Mother's Day!!
**Warning - this is a LONG one**
Sofia had a tough week of chemo treatments just after my last post. In her current Interim Maintenance phase she gets Methotrexate Intrathecal (lumbar puncture/spinal tap), a shot of vincristine into her port and a week of steroids every three months. Well, three months was up a few weeks ago and the nasty chemo and side effects returned.
We were back in the all-too-familiar routine of trying to keep a two-year old distracted from her empty tummy while fasting. The big day always starts with a late morning appt to see her onc at the clinic. Then we go to the hospital for the lumbar puncture procedure which generally occurs sometime after lunch. It is hard to explain fasting to the little ones who have not eaten since dinner the night before, so they generally let the youngest go first and the teenagers go last around 3 PM.
At 2 PM they still had not called for Sofia and she was getting hungry and cranky and tired. She finally fell asleep on my shoulder and I insisted Sofia be seen next. They agreed.
She has had this procedure done a dozen times or more by now and because she is put under light anesthesia before it begins she never remembers it or even realizes what happened. This time she knew. When she woke up she reached for her lower back and said "owie." So, either she is just getting older now and is more aware of the pain and soreness left behind or the new doctor doing the procedure (a seasoned doctor, just new to our group) isn't quite as smooth. Additionally, when I removed the band-aid the next day there were two holes. So, it looks like they had to do the puncture twice. Poor thing. No wonder she was sore.
The next morning she plopped down on the floor and started crying saying that her left foot had an "owie." She was not able to walk or put any pressure on that foot for over two weeks. The docs said it was more than likely the Vincristine which can make the nerves flare up in certain spots. We gave her ibuprofen for a few days until it was tolerable without medication. After about 10 days she was able to crawl and a few days ago she began to stand and put a little weight on it. As of yesterday she is walking, but still with a very obvious limp.
She started her week of steroids at the same time so we returned to the chicken noodle soup with a side of chicken nuggets breakfast menu, and meals every hour on-the-hour...NO JOKE! Needless to say, she is very chubby again. She finished the steroids over a week ago and the bloated look has gone away but her appetite is still a bit more than normal. She must have gotten used to the habit of eating so much so we are working carefully to bring her eating to a regular Pantis pace.
The day after the steroids ended we had to give her the every two-week pulse of methotrexate orally at home. She has to get two teaspoons of this every 6 hours for 24 hours including waking her up at 1:30 AM for one dose. This always makes her very tired and a little off. All of this on top of her normal, daily chemo pill and weekly antibiotics. She is such a trooper.
Needless to say, she was a very tired and clingy little girl for well over a week. Watching her go through all of this again - including not being able to walk - was a glaring reminder that she was not through this yet. Not by a long shot...or 21 more months to be exact. I had been happy with the false sense of security I gained from the much milder treatments and having the scheduled hospital stays behind us. I had a few sad days. We all did.
On a positive note, Sofia is a happy and energetic girl again and her 3-month's long hair did not fall out even after this last tough treatment. Yeah! Also, I was fortunate because I had taken time off of work during that treatment so I was able to be with her the whole time. I will do that for each future treatment as well.
Luckily, my heavy travel schedule (trade show season is early May through Mid-June) did not start until she was through this. I am also getting additional resources in my department at work so I am looking forward to that additional relief. Yianni's practice is doing very well and he has been unusually busy.
Andreas is just such a wonderful big brother. I am constantly pinching myself as I watch him and Sofia play together. They just adore eachother and he really likes to help out and take care of her (when she lets him!). Even when she was not feeling well she went with him to school every morning. She does not want to be left out of the fun or change her routine.
I am sure that my next post will be much more up-beat as this will be behind her and she will still have a couple more months before going through this again.
Please keep Sofia in your thoughts and prayers, along with all of the other sick children.
Remission forever!
Kelly
Tuesday, April 13, 2004 0:06 AM CDT Hello friends and family!
Spring is definitely here in Sacramento and the kids are loving the outdoors again. We had a wonderful Easter and I hope you all enjoyed the Holidays as well.
Sofia's last cold/cough did turn into bronchitis and she was on antibiotics. The cough almost went away and now it seems to be back again. Additionally, her runny nose is back so I am anxious to hear what the doctor says at her next appt in a few days. I assume they will just explain that her body is not operating at full strength and cannot fight off these things the way we do. At the last appt Sofia's counts had dipped a bit (ANC of 900 vs. 2000 at the prior appt) but are still in the safe zone.
Sofia has now learned to drive Andreas' 2-seater battery powered Jeep. She is one crazy woman driver...let me tell you! She likes to try to run over Andreas as he screams by her on his bike. They seem to love the thrill of the near-miss (as Mommy is screaming for Andreas to slow down and Yianni yells to Sofia to "turn...turn!!").
Andreas is now riding his bike without the training wheels which slowed his pace and kept him from taking the corners too tightly. Well, those days are over. He is truly a daredevil and I have to make him wear his helmet even when he is riding in our driveway for fear of him taking a nasty spill.
Sofia's height and weight are fantastic. I have not checked, but I would assume she is over the 90th %. That is such a miracle after all she has been through and the expected negative impact on her physical growth. Her mental and emotional advancement is also right on track. She is already learning the alphabet, a little Greek and her numbers as well as talking up a storm. She is also a social butterfly and gets along well with all ages and in all environments. You should hear her scream at Andreas when he uses his strength or age to his advantage, unfairly. She will have no problem sticking up for herself in life!!
Well, that is all for now.
We hope you and your family are doing well and enjoying the Spring time.
Lots of love,
The Pantis Family
Wednesday, March 17, 2004 11:43 PM CST Happy St Patrick's Day!
I can't believe it has been over 3 weeks since my last update. Sofia is doing just great and our life seems to be returning to (almost) normal.
Sofia has now been in the lower dose "intensive continuation" phase for a couple of months and she is happy, vibrant, and feeling good.
She still complains of an occassional tummy ache or yucky feeling, but that could be said of any 2 1/2 year old I suppose! The only remaining issue that concerns us is the recurring limp. This was her presenting symptom at diagnosis, but they said this may recur throughout the entire chemo treatment phase so we try not to worry. When her limp gets pronounced we try to keep her less active so as not to further aggravate it. It can be tough to keep a 2 year old from running and jumping!
Now that cold and flu season is about over and Sofia's strength and immunity are doing well we started her in a toddler gymnastics, and she loves it so much we let her go twice per week. She also started going to Sunday school and church with the family and is so appreciative of being out with everyone rather than having to stay home all the time.
I think Sofia's favorite outing is taking Andreas to school and picking him up. All of the kids and teachers know her and adore her. The girls in Andreas' class all take turns pushing her on the swings and playing big sister. This girl is spoiled. She knows it and loves it :-)
Her hair is also growing now and it is like a soft, furry blonde carpet. It has been interesting to watch how children react to Sofia. They know she is supposed to have hair and are curious as to why she doesn't have any but they never say anything hurtful. Kids of all ages are constantly rubbing her bald or fuzzy head. It is pretty cute actually. Good thing she doesn't seem to mind.
Well, that is all for now. I will only update this site every 3 - 4 weeks as everything is going so smoothly. Please keep praying for Sofia's continued remission and for all of the other sick kiddos.
Lots of love,
The Pantis Family
Saturday, February 21, 2004 2:47 PM PST Hello everyone!
Sofia has been in the intensive continuation treatment phase for 3 weeks now and is doing great. She is managing these medications well and only goes into the clinic once every two weeks for a check-up starting this week.
She has the energy and vitality of a healthy 2 1/2 year old again, is slowly regaining her appetite, getting back into normal sleeping and napping patterns and has very few tummy aches. Her hair is even beginning to grow again!
The limp she had a few weeks ago is gone so we are relieved about that. She also got a fever and cold/flu at about the same time. We are happy to report that she was so strong and blood counts were so high she was able to come home with some anti-biotics rather than be admitted. Her blood count was 3300 ANC, the highest it has been since her remission 7 months ago.
Please keep praying for continued remission for Sofia, and all of the other children fighting cancer.
Love,
The Pantis family
Monday, February 9, 2004 9:42 PM PST Hello friends and family,
We are happy to report that Sofia is doing beautifully!
Tomorrow marks 8 months since Sofia's Leukemia diagnosis. She began her "intensive continuation" or intense maint. phase last Thursday. She continues the chemo "6MP" nightly and now takes large doses of Methotrexate orally every 2 weeks. In the previous 8 months she received high doses of that drug via spinal tap and via IV regularly, but not orally. Additionally, every 3 months she will receive additional chemo via IV and spinal tap with Methotrexate. This is a welcome relief as we no longer have scheduled in-patient treatments.
Sofia started limping again last week which made us very nervous. The limp was her primary presenting symptom when she was initially diagnosed. Sofia's onc said that it is not uncommon for presenting symptoms to recur off and on during treatment, but to take it seriously and keep our eye on it. She seems to be recovering from the limp already so we remain optimistic for her continued remission.
Sofia's current favorite outings: riding the Carousel at Arden Fair Mall and visiting the Old Sacramento Train museum. She definitely has a little tomboy within her girlie nature. She loves everything Andreas enjoys...trains, cars, trucks!
And...our big Boy is turning 6 this week! He had a rock climbing party last Saturday and Sofia was able to join in the fun. Andreas is thriving in Kindergarten and enjoying reading books by himself for the first time.
We bought the kids a bunk bed set over the Holidays and the kids love it. Of course, Andreas sleeps on the top bunk and Sofia gets the downstairs. Sofia refuses to sleep in her own room anymore. The only reason she will leave Andreas' room is to crawl into Mommy's and Daddy's bed!
Speaking of bed...it's time for Mommy to go night night :-)
Thanks for checking in on Sofia - don't forget to drop a note to Sofia in the guestbook!
Kelly
Sunday, January 25, 2004 4:23 PM CST Great news...Sofia got over her infection and was able to receive her final in patient chemo treatment a week ago. It is hard to believe that it has been over 7 months since she was diagnosed and that we have now made it through the most intense phases.
Yianni and I meet with the oncology team next week to get the details on the next phase which last approximately one year, it is a medium dose maintenance phase and much lighter than her prior 7 months. Every treatment is out-patient and oral at home. Now, Sofia will only get spinal taps once every 3 months...hooray! The only reason she would need to go back into the hospital, in-patient, is if she gets a fever or infection.
Please pray for her continued health and safety.
Sofia's counts a few days ago were great in the immunity area and still a little low in the red blood cell/hemaglobin area. So, we let her ride the Carousel at Arden Fair Mall this weekend. She asks us to take her there all day, every day so it was nice to finally be able to tell her yes.
We still have to be cautious with her exposure to germs but we will try to let her participate in more kids events starting in Feb. Andreas Bday is coming up so she will have lots of fun with him and the kids at the party.
We hope all of you are having a wonderful New Year. Please sign into the Guestbook and post a note for Sofia so she knows you were here!
Remission for all children...forever!!
Kelly and family
Friday, January 9, 2004 10:21 PM PST Well, this past week did not go according to plan. Sofia was supposed to go in for her final in-patient treatment on Thursday, Jan 8 but instead got a fever and was crying and inconsolable saying her tummy hurt so the doctors had us bring her in Wed AM and she was found to be neutropenic (ANC of only 300) and admitted immediately. We were pretty scared because of the concern of kidney and other internal organ problems which are not unusual in chemo kids. However, it appears it was just a virus. Thank God. Her fever was gone in under 48 hours and her spirits up and they released her this afternoon. She is home! I can't believe how resilient she is, even without any immunity to speak of. She gets sick the least and heals the fastest in our family. Truly unbelievable. She has an angel watching over her.
Sofia did not get her scheduled chemo because of her fever and low counts. We take her back on Monday and if her counts are up we admit her again for the final in-patient treatment.
Writing of Sofia's minor infection and hospital stay seems trivial compared to what so many other children are going through on that floor. While in the hospital this last time we roomed with a sweet 12 year old girl who had a brain tumor with her cancer which was removed. Well, apparently it is back. It has grown enough to cause slurred speach and forgetfullnes. She starts on radiation next. The roommate before last was a two-year old boy who was so unhappy and uncomfortable: vomiting, hurting, crying all night. We have come to know several other children and all seem worse off than Sofia. A few other children we see often have now relapsed after months or even years of remission. Two boys have passed away.
It is so sad to see children having to be so strong at such a young age and endure these treatments. It makes us feel so lucky but at the same time we feel so terrible for these children. We are now so much more aware of the sad stories and unhappy endings that I rarely saw or heard of prior to Sofia's diagnosis. I feel like I could fill a book with heart-wrenching true stories. A book no-one would ever want to read.
I know so many of you ache for our Sofia and our family and are genuinely concerned and saddened at her illness. We thank you for that. I know in my heart that all of your thoughts and prayers have played a significant role in the success of Sofia's treatments. Please pray for all of the sick children out there and pray that Sofia stays the healthy happy girl that she is.
Remission forever for all of our children!
The Pantis Family
Saturday, December 27, 2003 9:11 PM PST HAPPY HOLIDAYS...HAPPY NEW YEAR!!
UPDATE 12/31: Sofia had her out-patient chemo yesterday and her blood counts were great. The highest ANC (immunity) since she was diagnosed, 2900!!! She is still very tired, however.
They rescheduled her final in-patient treatment from Jan 5th to Jan 8th. It should still be a four-day stay.
Ahhh...the kids are now asleep. Time for a relaxing New Year's Eve for Yianni and me. I am sure we will have more energy for a party next year!
ORIGINAL POST:
We all had a wonderful Christmas together. Of course, the kids received way too many toys. We let them open a couple of presents each night starting 12/22 so they could enjoy and appreciate each one each night. It worked out so well that we are making that a new tradition. In prior years they had to open, play with and enjoy 20 presents all in one hour on Xmas morning.
One of the most touching items Sofia received was a Christmas ornament signed by each of the Team Sofia marathoners. Thanks, Ladies!
Andreas is now 5 (6 in February...how time flies) so he was very ready for Christmas and could hardly contain himself once December came aroud. Surprisingly, even Sofia seemed to get the concept quickly at just 2 years old. She woke up an hour earlier than usual on Xmas morning, ran to our bed and kept pointing at the living room (where the tree and presents were waiting) saying "ho ho ho" over and over again. Andreas did not get excited about opening presents until he was 4 years old. Sofia, however, is already very adept at ripping open the gifts.
Sofia was healthy as was the entire family (about 20 people in all) so she was able to go to Theo Niko's for Christmas dinner. All of the cousins (ages 2 - 7) had a ball. After tiring of ALL the new toys we put on a Karoake dance DVD and the kids went wild. They were dancing, jumping, rolling and having a marvelous time until about 9 PM when the parents got tired and dragged them home.
Sofia had the in-patient Vincristine chemo on Tues (12/23) and has it again on 12/30. She is doing pretty well though she gets very tired in the evenings and is having some headaches and tummy aches. She has had a runny nose for a month now and it just got worse and was joined by a cough as of yesterday. We are crossing our fingers she does not get a fever so we can stay out of the hospital until Jan 5th, her next, and LAST in-patient chemo treatment.
By mid-January we begin the "intensive continuation" phase of chemo which consists of only at-home and out-patient (clinic) chemo treatments. Yeehaw!!!
We have plans for a mellow New Year's Eve at home with the kids. We are looking forward to ringing in a year of health, happiness, prosperity and...good sleep at home rather than the hospital!!
Wishing you and your loved ones all the best in 2004,
The Pantis Family
Wednesday, December 10, 2003 11:59 PM CST Hello friends and family,
TEAM SOFIA UPDATE:
I want to thank all of the women that make up Team Sofia. After training for 6 months and raising over $30,000 for the Leukemia Society's Team In Training program in honor of little Sofia, they walked/ran the marathon this past month. This took an incredible amount of determination, kindness and dedication. They gave Sofia the book "The Little Engine that Could" and each wrote a personal message to her. Please go to the "view photos" link along the top of this site to see a great photo of many of these women and the training mentors that supported them.
I am saving all of the marathon mementos, fundraising letters sent and other Team Sofia memorabilia for Sofia's memory box. I am sure it will be many years before it is appropriate to share all of this with her. It is strange but wonderful knowing that she will not recall much of any of her Leukemia experience.
SOFIA HEALTH UPDATE:
I have not posted in a couple of weeks (sorry) so I will start from where I last left off, the day before Thanksgiving...
Sofia and Mommy made it home from the hospital on Thanksgiving Day at noon, just in time to get the holiday dinner ready!
Sofia did very well with that hospital stay though her appetite is still very light and she is definitely losing weight. It is a good thing she was chubby and plump to begin with - now she just looks like a normal skinny kid :-)
Sofia was allowed to attend two parties this past weekend, including a really fun gymnastics birthday party. We have restricted her indoor activities, especially with children in order to keep her germ free. She was so excited and happy to being playing freely. You should have seen her. She was a ball of energy: jumping around, dancing, joining in with the big kids on everything. Andreas was a proud big brother helping feed her birthday cake and guiding her through some of the gymnastics stations. This was a great day for all of us.
We went to the clinic on Monday and all of her blood counts are perfectly normal. Her immune system is running strong again...just in time for this nasty flu season. My poor Mom is actually the one that got a bad case of the flu. She has been home sick for over 2 weeks as it developed into bronchitis. So Yianni and I have been juggling work and childcare during business hours. My mom (Nana Sharon)seems to be much better now and came back into our home to watch Sofia as of yesterday. Boy did we all miss Nana Sharon! We are all relieved to get back to our normal schedules again.
Sofia goes back into the hospital for her next scheduled in-patient chemo on Tues, Dec 16 for a few days. Then, only one more left in early Jan and we move to a lighter maintenance phase for the remaining 2 years. This will be a happy new year, indeed.
Please take a minute to leave a note for Sofia in the guestbook. We would love to know you were here!
Thanks for your continued support,
Kelly
Tuesday, November 25, 2003 10:45 PM PST NEW PHOTOS OF KIDS and TEAM SOFIA - CLICK ON VIEW PHOTOS LINK ABOVE!!!
Sofia returned to the hospital on Monday AM for a 3-day scheduled chemo treatment. She had been neutropenic for a couple of weeks from her prior heavy chemo dose so we were very excited to hear that her ANC count was 800 (anything under 500 is neutropenic - no immunity). Yeah!! She still is not in the normal range, but getting closer.
Well, it was a good thing she had some immunity in her because Andreas came down with congestion, coughing and spiking fevers up to 105 on Sunday night. We quarantined him into two rooms but it was too late. Monday night Sofia started running a temp of 101 in the hospital. If she had been neutropenic her body most likely would not have had the white cells to cause a fever and fight the illness (much less give us much of any clues to even know she was sick). We are thankful her white cells strengthened just in time for this cold.
The docs have continued her IV chemo so she will not have to miss her treatment which is good. They are also running cultures on her blood to make sure she does not have any infections. We should know the results of that on Wed.
She continues to run a fever of 101 while on Tylenol. If her temp does not go over that and if her cultures come back clear she should still get to come home Wed evening or Th Am in time for Thanksgiving and can continue her recovery at home.
Andreas was down to the 101 - 102 range earlier this afternoon even after his Motrin wore off. He did not have any fever tonight though he was on Motrin. He should be well by the end of tomorrow, Wed. Andreas always has very high temps when he gets a fever whereas Sofia does not. I am hopeful that hers will not go over 101 and that she will be over her cold in 48 hours like her brother. Then we can all be together on Thanksgiving and Sofia should be feeling pretty well by then.
She continues her daily chemo at home for a couple of weeks and will go back in for a 3-day chemo treatment around 12/15.
On a lighter note, Andreas lost his first tooth on Sunday! He had the obligatory visit from the tooth fairy and scored a few coins which made him feel better while under the weather!
Now, we have to keep the grown-ups healthy! The hospital night shifts and being around sick kids is taking its toll on us caregivers so everyone is already asleep. I am off to bed now myself.
Team Sofia Update: These 14 dedicated ladies raised over $32,000 in less than 6 months and are running/walking the Seattle Marathon this Sunday, November 30. Way to go Team Sofia and Leukemia Society! Thanks to all of you for your donations.
We have so much to be thankful for.
Two wonderful children that are happy and here with us. We treasure every day with each of them. A strong, enduring marriage. Caring friends and family that reach out and help us when we least expect it. Grandmothers that consider our life, children and obstacles to be theirs as well (we could not do this without Nana and Yia Yia). The best medical care and understanding staff only a few miles away. The thousands of courageous Leukemia patients (and their families) before us who participated in clinical studies which allow children with Leukemia today to survive with greater success rates and fewer side effects. Compassionate, generous and patient employers, coworkers, and clients. Last but not least, we thank God for answering our prayers and hearing all of the positive thoughts you have sent our way.
Happy Thanksgiving to all of you.
The Pantis Family
Tuesday, November 18, 2003 9:45 AM PST Sofia is home again! After 3 days in the hospital for observation due to being neutropenic (no immunity) she was released last Wed. She is staying at home until her white blood cell count goes back up. She was very upset about missing the birthday parties with Andreas over the weekend but was happy when we brought her some treats!
Sofia goes back to the clinic on Wed and I am confident her counts will be normal so she can play again for a few days before going back in for chemo.
Sofia will be admitted to the hospital again on Monday AM for three days for another spinal tap and MTX chemo via IV. We are hopeful she will be released on Thanksgiving morning - that will be good reason to give thanks!! We will have a mellow Turkey Day at our house with only immediate family as her counts may be low again after that round of chemo.
Yianni and I are taking that whole week off and Andreas is out of school so it will be a bit chaotic between the hospital and keeping him busy. We may be calling on some of you to schedule some playdates for him :-)
Happy Thanksgiving!!
The Pantis Family
Tuesday, November 11, 2003 5:25 PM PST Hello friends and family,
Sofia was admitted to the hospital after a routine clinic appt Monday AM (11/10) due to very low blood counts. This occured as a result of the very intense chemo treatment she has received for the past two weeks. We were told that there was a high probability that this would happen so we are a bit sad, but not depressed or surprised.
Sofia's hemoglobin was only 7 (should be 12 or so) so she needed a blood transfusion and her ANC (immunity) was 0!! This means she is neutropenic and is in a sort of quarantine mode in a special wing of the hospital. The great news is that she is still, as always, acting happy and cheerful. Nothing seems to get this girl down :-)
Additional good news is that they tested her for any infections and found none. When you are neutropenic your body cannot usually create a fever or other indications of an infection because of the lack of white cells. Because of this, an infection can take over before you know it. So, we are relieved to hear that she is not sick now and so long as we keep her well and her counts come back up she should be home after only 3 days in the hospital.
I caught a cold at the end of a business trip at the same time Sofia was admitted to the hospital so I am staying at Evangelia's house for a day or two until I am sure I am not contagious so as not to get any other family members and/or Sofia sick. This means that Daddy, YiaYia and Nana are all doing double duty alternating between staying with Andreas at our house and staying with Sofia at the hospital. I feel so bad because I can't help out or see the kids for a few days :-( But, it is worth it to be sure no one gets Sofia sick while she is so vulnerable.
Most importantly, we are relieved that Sofia completed the most harsh portion of her chemo treatments. She now has a week or so off of chemo to build up her blood counts and strength and then goes back to a medium level chemo phase until early Jan. We feel like she has made it through the worst of the 2 1/2 year treatment and we are so thankful for her strength and good nature as well as for the support from all of you.
We hope she will be well enough to attend some birthday parties and Thanksgiving festivities later this month.
Please take the time to leave a message in the guest book so Sofia knows you were here.
Thanks for checking in!
Kelly
Sunday, November 2, 2003 3:14 PM CST ____________________
UPDATE 11/5/03:
Sofia is now neutropenic (immunosuppressed) which means she has no/low white blood cells so she will need to spend the next couple of weeks at home and without any visitors. She still has high energy and is in good spirits, but the risk of her getting an infection is very high right now and her body would have trouble fighting it off. I will post again as soon as her white blood cell count goes up.
kp
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Our super girl Sofia is still doing great!
We are continually amazed at Sofia's strength and good nature. She started an intense set of chemo drugs last Monday, 10/27, and did not experience any nausea, vomiting, or other major side effects. She has been fatigued from time-to-time but that is about all. She was even able to go Trick-or-Treating and loved it. She was Blue from Blue's Clues and Andreas was, of course...SpongeBob.
The final week of this treatment is 11/3 - 11/7. She goes into the hospital for the outpatient spinal tap with chemo on Monday and then daily clinic visits for additonal chemo. Sofia then drops to one chemo med per day for a week moving to two weeks without chemo.
Her doctor said the chemo she is on now is cumulative and to expect her blood counts to drop next week and to experience some of the negative side effects such as the fever and vomiting. Please send Sofia your prayers and positive thoughts to keep her sailing through her treatments without ailments.
Her hair is starting to grow back now as well and is long enough to lay flat on her head vs. the wild scientist hair she had going there for a while - it was wiry and stood up on its ends. Now that she has been off of the steroids for a few weeks her belly and bloating has gone down as well. However, she is still chubby and cute, of course! This chemo has effected her appetite so she is not eating as well now.
Andreas is also doing very well. Just got his first progress report from Kindergarten and he has already mastered all of the basics: letters, counting, writing, sorting, etc. Areas he needs to work on: listening better and participating in all activities. Hmmm...I wonder if he got those traits from Mommy or Daddy?!?! As always, he and Sofia are still best friends and don't like to be separated. Andreas wanted to go straight to the hospital after school on the days she was gone. They also decided they like going to sleep together so they both fall asleep in Andreas' bed at night and then we move Sofia to her crib.
That is all for now. I will update Sofia's site again after 11/12 when this treatment phase is over.
Love to you all,
Yianni, Kelly, Andreas and Sofia
Sunday, October 19, 2003 12:17 PM PDT Hello friends and family!
Sofia is off of chemo until Monday, October 27. Hooray!! In just the few days since completing the 21 days of steroids and other chemo drugs she is acting like her old self again. Her energy level is through the roof. She is bubbly, laughing, joking, running everywhere and in a wonderfully joyous mood.
Her appetite is beginning to taper off so I hope that within a week she will be back to normal eating habits and lose some of her chemically induced bloating and HUGE belly! If you missed the last post on her appetite go to the Journal History of this site - you absolutely will NOT believe what she was eating :-)
On 10/27 Sofia goes into the hospital for a couple of days for one of the normal chemo drugs (MTX via spinal tap) and two very intense drugs she has not yet been introduced to. We have been counseled to expect fever, nausea and other flu-like symptoms. If all goes well she will have daily out-patient clinic visits for additional chemo and monitoring. If she does get sick from this round we will be in the hospital for an extended stay. We already notified my company that I may be out a bit during this period - no travel!! We want our friends and family to know we may be out of touch for a few weeks as well.
During this treatment she may also lose the little whisps of hair she is finally getting back :-( I know it sounds silly to comment on such a minor, esthetic side effect when this is a life threatening situation. In reality, it is the lack of hair that is the constant reminder to us and indicator to the external world that she is sick. I did not let her hair loss bother me the first time but if she loses the little she has now I think I will be saddened.
When this tough chemo cycle is completed she gets 2 weeks off and then returns to our prior routine from summer which Sofia handles beautifully. We are looking forward to the Holidays and Yianni and I are going to take quite a bit of time off with the family from Nov - Dec to enjoy the kids while Sofia is on a mild schedule.
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IMAX Fundraiser in Sacramento on Sunday, Nov 9th at 2 PM.
The IMAX fundraiser is scheduled for November 9th at 2PM. For just $15 attendees will enjoy yummy popcorn and soda while watching Coral Reef Adventure. Coral Reef Adventure is the newest IMAX release! This will be a great family event as well. I hope you can make it. The proceeds goe to the Leukemia Society in honor of Team Sofia. Hope you can make it!
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Thanks for your continued support and encouraging words. Please sign the guestbook so Sofia knows your were here!
Happy Fall!
Kelly
Thursday, October 9, 2003 10:04 PM PDT ___________________
IMAX Fundraiser in Sacramento on Sunday, Nov 9th at 2 PM.
The IMAX fundraiser is scheduled for November 9th at 2PM. For just $15 attendees will enjoy yummy popcorn and soda while watching Coral Reef Adventure. Coral Reef Adventure is the newest IMAX release! This will be a great family event as well. I hope you can make it. The proceeds goe to the Leukemia Society in honor of Team Sofia. Hope you can make it!
____________________
Sofia is still doing well. We are counting the days until she is off of the steroids...8 more to go! She is starting to get pretty tired now as the chemo seems to have a cumulative effect. She has been on a pretty intense regimen for 2 weeks and gets her third and final doses for this phase tomorrow. I hope the steroids and chemo are out of her system within the next week or two. Then, she starts up on 2 weeks of two harsh chemos she has not had before so I am a little nervous about her getting sick from them.
You would not believe how she is eating on these steroids. A typical breakfast:
6:00 AM - 1st can of chicken noodle soup and cup of juice
6:30 AM - 2nd can of chicken noodle soup and cup of milk
7:00 AM – one scrambled egg
7:30 AM – mommy’s scrambled eggs
8:00 AM – Nana’s scrambled eggs and another cup of juice
8:30 AM – 3rd can of chicken noodle soup
Just to mix it up a bit she may add a bowl of chili or mac n’ cheese depending upon her mood. Whatever happened to pancakes or cereal for breakfast??
Luckily she can't eat while she is asleep so there are approximately 10 hours per day she can't eat :-) Her voracious appetite has caused her to balloon out. Sofia's poor belly is now so big she can barely fit into anything with a waist band. The last two nights she has had severe tummy aches so she has been crying and miserable. We are really trying to find ways to keep her mind off of food but it is hard because those drugs make her think she is starving 24/7.
These steroids also make it difficult for her to sleep during the day so she has not been napping well and that adds to her fatigue. On the bright side she seems to have learned to control the "PMS baby attitude" steroid kids are known for. Other than some mini-fits the first few days on steroids she has actually been an angel. Now, her daddy wants to know how to control Mommy's PMS attitude. Who...me?!?!
Hope you are all enjoying the beginning of Fall. It is always nice to watch the changing of the seasons.
Thanks so much for your continued support and positive thoughts. We could not ask for a better set of friends and family!
Love,
The Pantis Family
Sunday, September 29, 2003 11:01 PM PDT **********************************
IMAX Fundraiser in Sacramento on Saturday, Nov 9th at 2 PM.
The IMAX fundraiser is scheduled for November 9th at 2PM. For just $20 attendees will enjoy yummy popcorn and soda while watching Coral Reef Adventure. Coral Reef Adventure is the newest IMAX release! This will be a great family event as well. I hope you can make it. $12 of each $20 ticket goes to the Leukemia Society in honor of Team Sofia. Hope you can make it!
***********************************
Sofia started the 3rd phase of her treatment last Thursday (referred to as delayed intensification). This phase uses the same drugs she received in the initial phase so we are hopeful she will handle them just as well as the first time around.
Part of this treatment includes 21 days on steroids. For those of you that have never had the PLEASURE of taking steroids yourself, or, better yet, having one of your children take steroids we can tell you that it is an experience! A few rules of engagement: never tell a steroid baby no, always have lots of baby's favorite food available...for hourly feedings, buy a set of clothes one size larger than normal to accomodate the bloating and the rapid weight gain! We call her "PMS Baby" when she is on the steroids. I am happy to report that this early into the 21 days of steroids she is only having one tantrum per day.
So far she has not had any other negative effects from this treatment phase though we do expect it to have cumulative effects in the next week or two including an inability to walk and losing the rest of her hair. These are short term side effects so we don't let them bother us.
Sofia goes back in for her next week's treatment on Thursday, Oct 1. I will be traveling on business so my mom and husband will be handling it all. Thank goodness for the support of family and friends. I can't wait until the Fall event season in my industry is over. Too much travel recently!
Team Sofia is doing equally as well. The marathon date is November 30 and Sofia's friends and family (primarily you...the readers of her site) have donated $5,000!! THANKS!!!
The team is closing in on the $36,000 goal they commited to but still need a little help in getting there. They have another fund raiser scheduled for Saturday, Nov 9 at the IMAX Theatre in downtown Sacramento. Tickets are $20 (I think??) and include the movie, popcorn and a drink. Great for the family! Please call or email me if you want more info on this. $12 of every ticket goes to the Leukemia Society in honor of Sofia. Of course, you can always just donate money directly by clicking on the donation link at the top of this page...below Sofia's picture.
Thanks to all of you for your support. Please pray for Sofia's strength during this current treatment phase.
Love,
The Pantis Family
Saturday, September 20, 2003 11:19 PM PDT Hello friends and family. Thanks for checking in on Sofia!
Sofia is thoroughly enjoying her scheduled two weeks off of treatment. She is so happy and vibrant and energetic. We celebrated her birthday with just the grandparents last weekend and she had a wonderful time. At only 2 years old she was very aware of the birthday concept any milked every part of it! I posted many new photos on the new Connect2Cure (donation) site including an album of her birthday photos. I hope you will take a peek!
Andreas is doing great, too. Every day that Sofia matures they are able to play together even more. They dance together, eat together, play school and "Simon Says" together. Did I mention they also fight over leaving the light switches off or on...putting the music volume on low or high...wanting to play with the other child's toy the moment the other child shows interest in it? Yes, they are siblings :-) And we savor every moment of it.
Sofia begins an intense phase of her treatments on Thursday of this week so I expect to be back to updating this site once or twice a week to keep everyone posted.
Team Sofia is going strong. This tenacious group of ladies has now reached the run/walk 10 miles milestone as they each prepare for the 26 mile marathon in November. They are also getting closer to achieving the $30,000 fundraising goal they have committed to. They have held multiple fundraisers including a garage sale this morning. Our own friends and family have donated over $4,000 via checks and online donations via the links on this site.
We all thank you so much. It has been truly amazing to watch the contributions appear...big and small...and read the wonderful notes of support and inspiration.
If you would like to donate please click on the blue donation link below Sofia's photo on this page. Every little bit helps the Leukemia Society to find a cure for these blood cancers and help those suffering and in need of assistance.
Please pray for Sofia's continued remission and for her strength in the upcoming treatment phases. We thank you for your love and support.
Best,
Yianni, Kelly, Andreas and Sofia Maria
Sunday, September 7, 2003 9:15 PM PDT Sofia had a short and uneventful hospital visit. Just the way we like them!
She went in on Thursday for two types of chemo she can only get in the hospital (via spinal tap and IV). It has become very routine now and these two types of chemo do not seem to have any negative side effects for her. So, she runs up and down the halls pushing her own IV stand and loves riding in the elevators and greeting everyone. Because she was healthy and strong she was also allowed to join other children in the playroom.
Sofia came home this morning and her big brother is so glad she is home. They are so sweet together it melts my heart (OK - they still do the typical mean sibling things to eachother as well - but the way they pat eachother when one is hurt or sad and kiss eachother good night makes me forget about the sibling rivalry stuff).
Sofia has only a few more days of chemo and then she gets a 2 week break before starting in on a strong phase of her chemo. We will not be having a birthday party for her this month - we will do it in January when she is expected to begin her lighter, maintenance phase of chemo. Please no presents. If you really wanted to do something for Sofia's 2nd Bday please consider a donation to Team Sofia instead.
Sofia is now an honoree for the Leukemia and Lymphoma Society Team in Training program. Team Sofia (14 women running/walking a marathon in honor of Sofia) is training hard and raising over $34,000 for the Leukemia Society - that is $2600 each woman is raising to help find a cure for these blood cancers.
I am really hoping that all of you reading Sofia's site can help out the team. You can even donate online by clicking on the donation link at the top of the page, or down below.
I uploaded a whole new set of photos in the donation website as well as a status update on Team Sofia's training and fundraising activities and Sofia's treatment plan over the next 27 months.
Thanks to those of you that already noticed the donation link on this site and contributed.
We appreciate all of your continued positive thoughts and prayers.
Much love,
Kelly, Yianni, Andreas and Sofia
Thursday, September 4, 2003 10:36 AM PDT Sofia is back in the hospital for a scheduled 3 - 4 day chemo session. She had her spinal tap chemo this afternoon and did just great as she always does. She is so resilient and energetic and we are so lucky! Even the nurses are amazed at how happy she is all the time. We hope she will be discharged on Sunday.
She had a little cold last week and we thought we were going to have to check her into the hospital but she is such a trooper that she kicked the fever in 48 hours so it never went over 102 and her blood cell counts stayed in an acceptable range. Go Sofia!
Andreas is absolutely loving Kindergarten. We are glad he has something so exciting to focus on while Sofia is in and out of the hospital. He already misses her and asked if she could come home tonight or tomorrow :-)
Team Sofia is also doing great. As you may know, Sofia is a Team in Training Honoree for the Leukemia and Lymphoma Society. 14 wonderful women are taking on a marathon in November in her honor. They are also taking the challenge to raise $2600 each - that is over $34,000 towards blood cancers and assistance programs for those patients in need.
Team Sofia has raised half of its goal so far and I promised them I would reach out to Sofia's friends and family - the readers of this site - to help them meet their fundraising goals. Please click on the link at the top of this page to donate what you can. Every little bit helps!
Check out the many new photos I uploaded to the donation site including the kids dancing in SpongeBob slippers and a day on the river in Old Sacramento. I also posted Sofia's continuing treatment plan and Team Sofia updates on this new donation site. It is great so I hope you check it out!!
Thanks to each of you for your positive thoughts, prayers and help.
Remission forever!
The Pantis Family
Wednesday, August 27, 2003 8:54 PM PDT Exciting News!!! Sofia is a Leukemia Society Honoree for Team In Training!!
A group of 12 fabulous ladies, including my best friend since Kindergarten, Michele Callahan, and her neighbor Culien Ortiz, have joined the Leukemia Society’s TNT program to run/walk a marathon in honor of our little Sofia.
“TEAM SOFIA” began a 6 month intensive training program in July and are out on the streets sweating it out wearing Leukemia Society T-shirts with Sofia’s picture as they raise over $34,000 and get in shape. Our family goal is to raise $7,000!
Sofia update: She is still doing just great! She went in for a check-up and blood count today and has equal-to or close-to normal levels in almost all areas. Yeah!
She goes back into the hospital for a scheduled chemo visit 9/4 - 9/7 and then she gets two weeks off of chemo altogether - just in time for her 2nd Bday :-) We are still quite cautious with her and keep her away from any potential germs so I think we will have a mellow family Bday at home and celebrate her Bday and going into chemo maintenance mode in January instead.
Please click on the link at the bottom of this page if you are interested in making a donation online to the Leukemia Society in Sofia's honor. That would be the best Bday gift - helping other Leukemia kids!
Continued thanks to all of you for your thoughts and prayers.
Hope you are all having a wonderful summer.
The Pantis Family
Wednesday, August 20, 2003 10:36 AM PDT SOFIA IS HOME...and the best she has been since the day of her diagnosis :-)
Sofia completed her scheduled 3 day hospital visit for additional chemo on Sunday AM. Not only was it an easy and uneventful visit, but Sofia had the most energy of any hospital stay so far.
Since her immune system is strong right now she was able to go to the playroom and they had great arts and crafts activities like spin art. Her legs and strength are almost back to normal so she was running up and down the halls with us trying to keep up so she wouldn't pull her IV out by getting too far ahead of the rolling IV pole!
She spent one day visiting the nurse's stations handing out cookies and roses to the wonderful staff. Sofia is treated like a little Princess by everyone there and they really are so caring and helpful. She has a small fan club of nurses that always want her on their shifts and the attendants fight over who gets to bring in Sofia's food tray because of her comical squeals of delight when it arrives..."Dah Daaaah"!
Sofia has only the nightly 6MP chemo for the next 3 weeks until her next scheduled 3 day hospital visit and then 2 weeks off of chemo altogether (just in time for her birthday - isn't that great timing!). So, if she doesn't catch a cold or something the next 5 weeks should be our most enjoyable since this journey began.
Andreas has also fully recovered from his virus so we feel like a normal family again.
I will not plan to update this site again for a week or so.
Thanks to Yia Yia Maria, Nana Sharon, Nouna Evangelia and all of our friends, family and work associates for the continued support and prayers. You have all amazed us with your love.
The Pantis family
Tuesday, August 12, 2003 11:09 AM PDT New Photos - see photos link above!
Sofia is walking much better again. It appears to be a certain chemo drug called Vincristine that effects her mobility most. It also makes her hair fall out so she lost a little more last week. Luckily, she won't have that drug again for another 6 weeks or so.
She is so happy and doing great. We are appreciating this "mild" chemo phase which she will have for the rest of summer. End of September she begins a harsher phase.
Andreas took a turn being the sickie. Friday night he had a slight fever and complained of a sore throat. By morning we realized he meant a sore, stiff neck rather than a sore throat, he was lethargic, could barely walk and when his fever went over 103.5 we rushed him to the hospital to rule out Meningitis. After 3 attempts at a blood draw, an IV and a spinal tap he was diagnosed with viral meningitis which is the good one vs. the scare factor of the bacterial meningitis we read about in the papers. Apparently there is an epidemic of it in our area currently. We have had to quarantine him in one side of the house!
Update: I just talked to the hospital and Andreas' culture came back negative, no menigitis, just a regular virus with the same symptoms as meningitis. We are so relieved - we do not have to quarantine him anymore and he is starting to eat again today so he should be back in school tomorrow. Yeah!!
Sofia goes back into the hospital on Thursday for a scheduled stay for more chemo and should be home by Satruday or Sunday.
We appreciate your prayers for her continued remission and no bad, long term side effects from her treatment.
Hope everyone is having a great summer.
The Pantis family
Monday, August 4, 2003 1:11 AM PDT NEW PHOTOS - CLICK ON THE VIEW PHOTOS LINK!!
Sofia is still doing just great!
She started her second round of steroids last Thursday (known as Dex) and it is making her a bit cranky, impatient and whiny - but not too bad. She is also starting to get the big steroid appetite back. She had three pieces of her Yia Yia's chicken along with pasta and fruit for dinner on Saturday!
Sofia is a bit pale again but the docs think it is just the Dex and chemo so I hope she gets her color back shortly after her week of Dex ends.
The most exciting news of our weekend was the swimming! We went to Uncle Nick's (Theo Niko's) house and Sofia and Andreas swam with cousin's Niko and Zoe. Sofia has missed out on swimming for the last two months so she was very happy to be splashing in the water again.
So far, we really love her new central line, the Port-A-Cath. She has already had it accessed once for a blood draw and chemo last week and it was pretty quick and painless. Well worth the new ability to get wet and avoid having adhesive bandages and tubes on her chest!
Next out-patient clinic appointment is Wednesday afternoon. Should be a quick and easy one again like last week. Sofia's next in-patient visit for the more heavy duty chemo and tests is August 14 for four days.
Please, continue your prayers and positive thoughts for many more uneventful and wonderful weeks like the past few!
Thanks for being here - Much love,
Kelly and family
Monday, July 29, 2003 10:17 PM PDT Sofia is back home and doing just great! She is even walking around for long stretches with little-to-no assistance. She is still a bit wobbly but very close to having all of her strength back. It makes us smile to see her laughing and pushing her dolly stroller around the house again!
The hospital visit last week was scheduled (i.e. not an emergency visit), short and sweet. Just as we like it. We hope to have only these types of visits from now on!
This 2nd phase of chemo has a nice leisurely schedule through September: one afternoon per week at the outpatient clinic for chemo, one chemo pill every night at home and a repeat of the scheduled hospital visit for 4 days for additional chemo via IV and spinal fluid every three weeks. Sofia also starts a new steroid for 7 days next week so she will probably become a little porker again which is a good thing as she has not had much of an appetite the past few weeks.
Her new port-a-cath is great! No more tubes - just a small metal disk about the size of a quarter under her skin on her chest. It feels like a little hill under her skin - maybe 4 or 5 millimeters high?? She is supposed to be healed enough to take a bath with her brother tomorrow night. This is so exciting for us because she has not been able to take a real bath in two months due to the prior Broviac central line which had an external tube on her chest. She has really missed splashing in the bath so tomorrow's bath night will be a photo opp for Daddy!
Well, we hope this will be an uneventful week so I hope to have nothing to report until next weekend.
Thanks to all of you for continued support and prayers,
The Pantis Family
Thursday, July 24, 2003 9:05 AM PDT Sofia is doing well after her surgery for a new central line Wed afternoon.
Her Broviac central line just came out some how last Friday (tubing surgically implanted into her chest in a vein/artery with a long tube attached to it which comes out of a small hole in her chest and dangles about 10 inches). So, on Wed they implanted a different type, a Port-A-Cath, which is placed under her skin on her chest so it is not visible; no tubes to pull out or get infected!
The main difference is they must use a needle to access the Port-A-Cath under the skin. They only have to use the needle once each stay or visit and then they hook the IV's up to the Port-A-Cath for administering chemo, blood transfusions, blood draws...everything. We are hopeful this type of central line will be easier to manage as we do not have to flush it daily or change the dressing twice a week at home like the Broviac.
Sofia also started the 2nd phase of her chemo treatment yesterday with chemo via IV and spinal fluid. She receives the IV chemo over 24 hours and so long as she has no negative side effects we hope to bring her home Saturday.
Prior to her current hospital stay Sofia was home for about 10 days and in great spirits. The first phase of chemo and steroids had worn off and she was happy and energetic and really enjoying playing with her big brother and being able to go outside (except when it was 100 degrees!). She is even standing up on her own now. She has still not wanted to walk and now that she is back on chemo she may continue to crawl or have us carry her. Her weight is back up to 30 pounds so carrying her around is no easy task!
As always, our family and friends are helping out with food deliveries and play dates for Andreas. Our jobs continue to go smoothly due to the fantastic support of First American and Yianni's clients. Thanks to everyone!
I will update again this weekend when Sofia comes home.
Have a great weekend,
Kelly and family
Saturday, July 19, 2003 9:39 PM PDT NEW PICTURES - CLICK ON THE PHOTO LINK!!
We had a little scare on Friday (everything is fine so don't worry).
When Sofia awoke Friday morning Yianni found Sofia with her Broviac tube completely out of her chest! The Broviac is a catheter/stint that was surgically implanted into her chest in a vein or artery with a long tube attached to it which comes out of a small hole in her chest and dangles about 10 inches. She receives most of her chemo and all blood transfusions and blood draws through this tube.
Yianni was so calm I could not believe it as he came into our room to tell me what happened. I had visions of terrible bleeding and jumped out of bed expecting to rush to the emergency room and he assured me that there was no blood and that Sofia was happy as-could-be.
We called her doc and they said that since it was not bleeding they did not expect it to be an emergency. Nana took her in and the docs said she was fine. They scheduled surgery to remove it for Wed 7/23 as she was already scheduled to be admitted that day to start her next treatment phase.
I had a queezy stomach that whole day. Sofia really is doing fine but the event did disturb us a bit. Every day I wake up wondering what excitement is in-store for us next! In the first 45 days now we have had to rush to the hospital for an infected Broviac, fever and Staph infection, hives on her legs and now a missing Broviac. I can only imagine what is next!!
We do realize how lucky we are and are not complaining. We are experiencing very mild events compared to so many other children with Leukemia and more severe problems. We are simply learning to handle minor crises on a very regular basis and learning the wisdom of living one day at a time.
Sofia has not been walking or very active since her diagnosis and chemo. Then to make matters worse she twisted her ankle when she finished her first chemo cycle 10 days ago.
Today she was the most active we have seen her since this all started. She crawled around quite a bit (which does look a little odd as she is 22 months old, but under these circumstances we were ecstatic). She also practiced going from sitting to standing and sitting again multiple times today and took a few steps when we helped her. She is relearning these basics as she regains her strength and physical confidence.
Andreas is doing incredibly well. We are so thankful that he is such a happy and easy going boy. He makes Sofia laugh and laugh and is very patient with her new mood swings and the fact that we have to give more of our time to her than we used to. He starts Kindergarten August 24 and can't wait. He already started the after school club at his new Kindergarten school and really enjoys it. Andreas is now an "Otter" as he graduated from his 2 week swim class and now he wants to take another swim class so that is our next project. He still takes gymnastics each week as well and his Thea Evangelia took him last week...that was a treat!
Yianni and I are starting to get back to a more normal routine. We actually got out of the house and had a date that Friday night - it felt great!
Yianni is getting caught up at work and I took my first long distance, overnight business trip since Sofia's diagnosis. Leaving for the airport was difficult but I found it was actually refreshing to focus on something other than Leukemia for 36 hours. I am starting to get caught up at work but have a way to go before I am there.
Thanks to all of you for your continued support and prayers. Every evening Yianni and I close our day by sharing your emails, cards and guestbook entries. You are all the best!
Kelly and family
Wednesday, July 16, 2003 12:27 PM PDT Life is good!
(new pics on the photo page)
Sofia is doing very well. She was in the hospital for 48 hours Sun - Tuesday because she had a possible infection in her Broviac (catheter implanted in her chest - a port for blood draws, chemo, transfusions, etc.). They watched over her and did blood cultures and she did not have an infection so they sent us home. Yeah!! They said this was a good sign that her body's own immune system was able to fight off whatever got into her Broviac without turning into an infection. Go Sofia...go!
Our Super Champ Girl is enjoying being home again. She has been going to sleep late each evening...not sure if it is the new chemo drug she started on Monday called 6 MP or just coincidence?
Yianni and I had a long meeting with the onc docs on Monday. She is officially on the standard risk protocol (POG 9905) now rather than the high risk protocol...another yeah! The docs said they actually consider Sofia to have a low risk type of ALL but for some technical reasons (a white blood cell count over 50,000 at diagnosis) she cannot go below the standard risk treatment.
Additionally, we agreed to include her in an ALL clinical trial (study) of the POG 9905 protocol and there are 4 different arms of it. Sofia was randomly assigned to arm C. This arm has a more intense 8 week period of chemo during the consolidation phase than the standard arm (arms A and B). They layer what she had in the first month of chemo (induction phase) on top of the consolidation phase. So she will double up on chemo for that 8 week period. Everything else in arm C is basically the same as the standard arms. We decided this is a good thing because it is a bit more intense and we are hopeful the extra treatment will help to keep that Leukemia away for good. We also know that the results of this study will help many more children like Sofia. We are thankful to the thousands of children before Sofia that participated in these trials which has raised the cure rate from under 5 percent prior to 1970 to over 85 percent today.
Please sign the guestbook before you leave. It brightens our day to read your entries!
Thanks for visiting and caring.
Kelly and family
Thursday, July 10, 2003 7:32 PM CDT GREAT NEWS...SOFIA IS IN REMISSION!!
Thanks to everyone for their prayers and thoughtfulness. That, along with our fantastic local medical team and the strength of our super champ girl have resulted in an incredibly successful first month of treatment (referred to as Induction).
She is in remission now and should be moved from high risk to standard risk tomorrow. This means she will also get a slightly gentler chemo protocol (POG 9905 rather than POG 9906). She gets two weeks off from the hospital and steroids - yeah!! She has only one chemo pill to take at home each day during this break. Then, Sofia starts the second phase (consolidation) of her 2 1/2 year treatment with a 3 day in-patient chemo session followed by two trips to the out-patient clinic each week. We are told this will be a fairly mild phase similar to or easier than the first phase. Some subsequent phases will be much tougher, however.
Finally, her white blood cell and neutrophil (immunity system related) counts quadrupled in the past two days and her red blood cell, hemaglobin and platelets are at or near acceptable levels now. She is no longer neutropenic (lack of any immunity) and has color in her cheeks again. I will upload a new picture of her with her new, short pixie hair later this weekend.
Counts as of 7/10:
- WBC (White Blood Cells): 4100 (normal is 10,000 - 20,000; below 3600 is low)
- ANC (Neutrophils): 1000 (below 500 is neutropenic/lack of immunity)
- RBC (Red Blood Cells): 3.69 (3.90 - 5.70 is acceptable)
- Hemaglobin: 11.1 (12 - 18 is acceptable)
- Platelets: 264 (normal is 202 - 386)
I cannot begin to express our relief and joy in knowing that our little gal is getting the best possible results and prognosis. At the same time we are keenly aware of the roller coaster ride ahead of us and are taking this one day at a time.
Thanks for your thoughts and prayers.
Love,
The Pantis family
Tuesday, July 8, 2003 10:51 PM CDT SOFIA IS HOME!!!
This morning Sofia's ANC got up to approx 250 (from 84 yesterday) and the doctor told Yianni to take Sofia home...quickly...before he changed his mind :-)
This was an unexpected surprise! We are elated to have her home. She wouldn't nap at home all day as she was busy having fun in her familiar surroundings.
Now we have to get used to flushing her catheter, crushing her medications and other medical stuff. That is just fine with us - much better than being in a hospital where they have to check her vitals every four hours including the middle of the night and do daily blood draws!
Cross your fingers and send a prayer for her bone marrow test and spinal tap on Thursday. Full remission...full remission...full remission!!!!
Thanks for your love and support,
Kelly
Tuesday, July 8, 2003 0:02 AM PDT Believe it or not Sofia is still in the hospital. She has only been home for 2 days out of approx. 30. Yikes! We joke with the doctors and nurses that she wants to be in the 30 day hospital stay club.
She is now over her staph infection she caught from her first hospital stay - just a slight cough remaining. However, these last couple of doses of chemo seem to be kicking in as her ANC (neutrophil count - a type of white blood cell related to immunity) is very low and her hemoglobin (red blood cell related to carrying oxygen among other things) is also very low. This required her to get a blood transfusion tonight. She has not had one since her first week of diagnosis. That should pump her up quite a bit. She has also lost quite a bit of her hair. She has a very short and thin pixie hair-do now. She is also getting the chubby and bloated look from the steroids that we were told to expect. These physical changes remind us of her Leukemia but she still looks so wonderful and beautiful that it has not bothered any of us a bit...yet!
Sofia's counts this AM:
ANC 86 (500 is the lowest acceptable number to allow her to go home, generally)
Hemoglobin 7.4 (8 is low and requires blood transfusion, 12 - 14 is normal)
White Blood Cells 1420 (10,000 is normal in a child)
Sofia has just 3 days left on her first cycle of treatment. Her chemo was complete for this cycle last Thursday and she has just two days of Prednisone left (a steroid). Then, Thursday, July 10 she will have a bone marrow test and spinal tap to confirm whether or not she is in remission. The doctors are hopeful that she is remission because of her positive response to the chemo so far (the low counts).
Should she be in remission on Thursday (please, pray for this) she will be reclassified as standard risk rather than high risk due to her quick remission and the other positive prognostic indicators from the past few weeks: B-cell ALL rather than T-cell ALL and normal chromosomes rather than chrosomal abnormalities. Remission on Thursday would mean moving her to a slightly less aggressive treatment protocol POG 9905 rather than POG 9906. In either case, as she has not had any leukemic cells present in her central nervous system she will not need radiation in her treatment plan. Phew!! We are crossing our fingers for no leukemic cells appearing in the central nervous system.
If she is not yet in remission then she will have two more weeks of chemo added to this initial cycle and will stay on the high risk protocol. We are all thinking positive thoughts for remission on Thursday.
Andreas started swim lessons today and starts going to his after Kindergarten daycare for a few hours a week tomorrow. He seems to be really tired from all of his activities the past two weeks including a fun, late night on July 4th. So, we are trying to slow his schedule down a little and get him to bed earlier. Poor little guy! He is still as sweet and fun as ever.
I have my first overnight business trip Tuesday since Sofia's diagnosis. It is hard to leave right now - even just to So Cal for one night. I think business travel will remain difficult for me for the next few years. I am not sure when, if ever, life will fully return to what it was.
Yianni are very fortunate we have been able to have flexibility with our careers during this intense period. First American has been so understanding with me and allowed me to take the personal time I need and work a flexible schedule. My bosses and peers are all helping out with my workload with a smile. I am very lucky. Yianni has been able to stop taking on any new clients and should be winding down a couple of cases in the next month or so. He will then focus on only his core clients until our life stabilizes. This has enabled him to free up his work week a bit as well.
Thank goodness for the Grandmas and friends and family helping out as well. We are blessed!
Kelly
Friday, July 4, 2003 3:53 PM CDT Happy 4th of July!
Well, we thought Sofia was coming home last night as her white blood cell and neutrophil counts were coming up two days in a row. But, after we packed up her things they said her counts stopped rising and went flat. So, until they start rising again she has to stay in. We were so looking forward to having our family all together again - especially for the long holiday weekend. Oh well, at least she is doing well and strong. We can't ask for more than that.
We also got some good news regarding her prognosis...that info is in the prior journal entry if you go to that link.
We are off to Betsy and Gary's house for a 4th of July block party and parade. We are decorating Andreas' bike so he can ride in the parade. He is so excited :-)
We will let you all know as soon as Sofia comes home!
Thanks for your thoughts, posts and prayers.
Have a nice holiday!
Kelly
Tuesday, July 1, 2003 11:48 AM PDT Sofia is still doing well but she was not able to come home tonight. We’re not sure when she’s coming home - hopefully no more than a few more days. Although the antibiotic treatment lasts 10 days and today marks the end of the 10 days, they also wanted a certain portion of her white blood cell count higher before she goes home (the neutrophils). Nothing to worry about, though – all normal.
We also got some encouraging news today. Her chromosome analysis results came in today. Apparently, children with Leukemia have various chromosal abnormalities. The cure rate for ALL (Acute Leukemia) is generally 95%. However, if you have a "bad" chromosomal abnormality your success rate statistics can drop significantly. We were told today that her results keep Sofia in the high cure rate group. That was the last prognostic indicator we were waiting on. We are thankful that every indicator is so positive.
We added an extra day to Andreas' preschool schedule to enable us to better manage Sofia's care and hospital schedule. He is now in preschool 4 days per week and loving it. We are so lucky he loves his school, teachers and friends so much.
We have great outings planned for Andreas every weekend thanks to you - our friends and family. He has had fire station tours, sleepovers, pool play dates and more to keep him occuppied. He has been dealing with Sofia's absence incredibly well. He goes to the hospital every other day or so and is content with that. He understands that she will be back and forth between home and hospital for a long time. He is a wonderful 5 year old!
Other than two cars being in the shop (my mother's and mine) and scheduling round-the-clock hospital coverage life is good.
A special thank you to each of our mom's (Yia Yia Maria and Nana Sharon) - we could not manage through this without their tremendous love, support and assistance.
Thanks to all of you for your kind thoughts and prayers. Your emails, guestbook entries, calls and thoughtfulness are therapeutic for us.
Kelly and Yianni
Sunday, June 29, 2003 11:09 PM PDT Sofia is doing great. All that appears to be left of her staff infection is a cough and slightly runny nose. She is energetic and happy and sleeping well.
She is so used to the hospital routine now that when she sees the nurse coming with the arm band for the blood pressure check she usually sticks her arm out and helps to pull the velcro band off when it is done. She finishes up the routine with a round of applause and waves good bye when the nurse leaves. A few lucky nurses have even received hand-blown kisses from her!
Her White Blood Cell (WBC) count was at 57,000 when she was diagnosed (normal is 10,000 - 20,000) and most of them Leukemic. She got down to .8 (yes .8) a few days ago as the goal of the chemo is to kill of all WBC, good and bad. The doctor's were very happy that she was responding so well. The last few days her WBC went up. She was at 900 yesterday. This appears to be her bone marrow producing healthy WBC on its own. All good news.
We hope to have her home Tuesday night after her 10 days of antibiotics for her staff infection. Thursday, July 3rd will be the last day of chemo for her in this first cycle of chemo. We can't wait for the break in the chemo and prednisone for her. We just pray she will not get any infections or illnesses during her few weeks off so she can stay home.
I really want to thank all of our friends and family for the support given to us: calls, cards, emails, guestbook entries, balloons, books, toys, watching Andreas, bringing food, and especially for the positive thoughts and prayers.
We are very fortunate.
Luv,
Kelly
Tuesday, June 24, 2003 1:37 PM CDT It looks like Sofia may have a staff infection from her initial 10 day hospital stay. This means that she must stay in the hospital for 10 days again this time in order to get the 10 days of antibiotics via her IV. That will be 2 days home out of 22...yuck!
The good news is her fever is now gone and she is back to her old self and playing again.
Sofia is such a trooper!
The last day of her first cycle of chemo is July 10 so we expect to know about how she is responding to the treatment in mid July.
Thanks for caring!
Kelly
Monday, June 23, 2003 11:23 AM PDT Well, we thought Sofia would be home for a few weeks as her next scheduled hospital stay (in-patient) was scheduled for July.
She got a runny nose and cough with a slight fever on her second day home (Saturday, June 21) so we had to take her back to the hospital. We expect her to be home in a week after the fever/infection is gone and some of her blood counts go back up (neutrophils, specifically).
The realities of this disease are setting in for us. We are beginning to understand that no matter how much caution or preventitive measures we take she will still get sick due to her weakened state. This means more tests and hospital stays for her and more disruption and stress to our family.
We continue to keep Sofia in a germ-free, safe environment but realize we must remain flexible for the unexpected at all times over the next couple of years.
I want to thank all of you for your kind emails and cards, helpful gestures and prayers.
Kelly
Sunday, June 15, 2003 9:20 PM CDT Additional information from Nana Sharon:
Just wanted to add some more positive stuff: Sofia will come home from the hospital Thursday, June 19. She does not notice her new chest catheter very much--just the itchy tape that keeps her from pulling it out. She is in
good spirits and loves the new toys and books we bring her to keep her occupied. She is never without a family member--we take 8 hour shifts, even sleeping there. And there are frequently several people there, including Andreas, who
really misses her and requires us to put his big Sponge Bob pillow in her car seat, strapped in of course, because he does not like to see it empty as we travel to school and hospital.
She has done well with this first course of chemo, still has her hair but little appetite. The worst thing--blood draws every four hours with no veins wanting to give any--is over now and draws are done through the catheter in her chest vein instead. Most of the chemo drugs are also administered this way. The IV drip is done into that also
so the IV in her arm is now gone. This catheter is a wonderful invention and will keep her from bathing or swimming for 2 1/2 years but will make her life a lot more comfortable.
We have gotten over the initial shock of it all and are just very occupied with the details that will involve all of us. Kelly and Yianni will go to 20 hour workweeks and the relatives are donating time. We hired a gardner
and stopped some home improvement projects. Vacations are on hold. We need to make room for her special needs now and keep everything safe and hygenic to prevent cuts, ruises, infections.
She had just started a little parttime preschool class that she loved but that is too dangerous now. We will find some other little girls in her situation and set up play times
together instead.
Will keep you updated. Please think positive thoughts toward Sofia--research is showing that it actually makes a difference, even from a distance.
Love from all of us, Sharon
Thursday, June 19, 2003 11:13 PM PDT Sofia is progressing well. She came home tonight after 9 days in the hospital. We are all relieved to have her home.
Yianni, Sharon (my mom - aka "Nana") are learning how to administer certain medical care from home. These were not skills my husband and I ever thought we would need.
Andreas (now 5) missed his baby sister while she was an inpatient and visited her almost every day. The Pediatric floor has a great playroom and and a refrigerator stocked with chocolate milk, juice, popsicles and ice cream so it was an immediate hit.
As Andreas and Sofia have become expert little travelers they refer to it as the "Hospital Hotel." Of course when 21-month old Sofia says it it comes out something like..."Daaa Deee Da" of some other jibberish.
We had so much help from Nana Sharon, YiaYia Maria (Yianni's mother) and Thea Evangelia (Yianni's sister) - I do not know how we could have made it without them.
INDUCTION/INITIAL TREATMENT
She was officially diagnosed with Leukemia (pre-B cell ALL) on Wednesday, June 11 and began her 2 1/2 year treatment two days later.
On Friday, June 13th (yes...Friday the 13th) she had surgery to place a Broviac (catheter) in her chest. She now receives almost all of her chemotherapy medicine, blood transfusions and gets her blood drawn from this catheter. This is such a wonderful invention. Though she will keep this tube in her chest for 2 1/2 years and will not be able to partake in water activities like she used to it is better than having needles in you all the time!
Sofia also started the chemotherapy treatment that Friday. She is on a fairly aggressive treatment plan for the first month of treatment. The next cycle will be more mild if all goes well this month. We are happy to say that after one week of chemo so far she is really doing well.
The steroid she takes (prednisone) makes her eat like a little piggy again and is also supposed to cause bloating. She is such a cute chubby little thing I don't know that we will notice the bloating :-)
July 10 is the last day of this initial cycle (referred to as the "induction" phase of treatment). Then Sofia will get the spinal tap/bone marrow prcedure to monitor the results and allow the docs to determine the type of treatment she will get next.
After July 10 Sofia gets two weeks off chemo before we start up on the second cycle. I can't wait!
Tune in next time for...Will Goldie Locks keep her curls after the first month of treatment???
Thanks for visiting Sofia's web page. I will try to update this weekly.
We appreciate everyone's thoughts and prayers. I know they will make a difference in her recovery.
Love,
Kelly
Saturday, June 14, 2003 1:12 AM CDT Dear Friends and Family:
I am writing this email to let our friends and family know that our little
girl Sofia Maria has recently been diagnosed as having leukemia. Leukemia
is a type of cancer of the blood.
We are very thankful that Sofia has a variety of leukemia known as "ALL."
This is the most common type of leukemia and also the most treatable. The
success rate is about 95% nationally and slightly higher here locally.
We are also very thankful that we live nearby and have access to a hospital
with a pediatric oncology unit. The doctors, nurses, and staff have been
absolutely wonderful to Sofia and to our family.
As I mentioned, there is a high probability that Sofia will be fine after
treatment. The treatment, which includes chemotherapy, will last for about
2.5 years. The first month will be very intensive, the next 5 months
sligh! tly less so, and, if everything goes as hoped, the final 2 years will
be more of a maintenance period (weekly treatments).
Your thoughts and prayers are much appreciated.
Yianni, Kelly, Andreas, and Sofia Pantis
Saturday, June 21, 2003 1:03 AM CDT This page has just been created. Please check back for additional updates.
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