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Sunday, February 4, 2007 10:19 AM CST

Happy Belated Holiday season to all!!!!!! Things have been very busy this winter for our family. The holidays were good with the exception of Victor contracting RSV four days before Christmas. He was admitted to Childrens for a few days "just to be monitored closely". he did fine! We were home Christmas eve and home for the holiday. We were able to go to church and celebrate the holiday with family! Victor recovered fine.

On January 15th Victor turned 8. We celebrated by having a huge birthday party for him and Nicholas at the YMCA's gym. (Nick turned 5 on Feb 1st) The kids all had a great time. Our local paper did a complete birthday page on Victor!

The following weekend we headed to Wisp Mountain for a long weekend get away, thanks to the wonderful Believe in Tomorrow Foundation. Wisp is located in the mountains of Maryland. We had a fantastic time snow tubing, taking snowboarding lessons, swimming and just relaxing in the awesome long home we stayed in. Anyone in the surrounding area who has the oppertunity should visit the Wisp Mountain resort, it is amazing!!!!!

Sadly our friend Brandon passed away in December. This is the child that Victor did fundraising for this fall. Victor was honored by our mayor with a proclamation for his outstanding efforts for compassion and caring for his fellow neighbors! He went before our local council and was on TV.... This was the same night that Brandon was sent home from Children's on hospice. It was a bitter sweet night for us! Brandon is missed terribly by his friends and family. It's still hard to believe that he's no longer with us.

Good does come from bad. As strange as this may sound, leukemia has made Victor into the 8 year old boy he is today. Sounds twisted but he is so caring and compassionate towards others. He has such a great spirit and he just shines everywhere he is!! He is loved at his school by all his teachers. He is friends with everyone. I got a call from a reported from our local paper this past week, Victor has been voted PLUM BORO'S CITIZEN OF THE YEAR! I am so proud of him! His spirit has touched so many, this proves it! He has touched the lives of so many others and has shown us all just how fragile life
is! Victor is going to be presented with a plaque and interviewed by Kristi, our awesome news reported, who has took a personal interest in Victor's story! She has made Victor into a celeberity. She is proof that news is so much more than "just news" its people's lives that are effected by what we read in the paper of see on TV. She has shown others just how close to home cancer can hit!

On the medical front, in addition to RSV (which Victor did an awesome job fighting off) Victor also got the Flu last week. He had a cough and fever, we took him in right away and viral cultures came back positive for influenza. He took tamiflu for 5 days and seems better other than a lingering cough.

His GvHD seems to be stable. No gut issues, no skin issues, and his lungs are just the same even with the cough and colds he's had. He will see the pulminologist in March and if his PFT is stable than we are going to try to taper off of the anti-rejection drug FK506 that Victor has been on since his transplant in May of 2005. We are hopeful that this will be his next accomplishment. He's still taking prednisone but only 5 mgs every other day. He's going to stay on that dose while we try to taper the FK. If all goes well once off FK, then we'll be able to stop the steroid!!!!!!!!! Please pray that his GvHD had burned out for good!!!!!!

Keep checking the bottom of this site under the link part. I'm trying to get all of the articles from our paper up so all can share Victor's story!!!!!!

Thanks for checking in on Vic, I promise that I'm goning to keep this site updated more often!

Love,
Apryle

Friday, November 3, 2006 5:38 AM CST

WOW! I don't know why it takes me so darn long to update this site! Even with Audra bitching at me, I just laugh and turn off the computer!!!! Hahaha, I love you Audra!

First off, Victor has been doing great! He's only going to clinic once a month. We seen the pulminologist Oct 16th and he's very pleased with Victor's lung function. He advised us to talk with BMT about tapering further off of steroids, and Victor will only need PFT's every other month. YES! Victor had all of his 18 month post transplant testing done with ease. His FISH test shows 100 emale cells, which makes him a girl (NOT) which makes him all donor cells since his cord blood was from a baby girl. Counts, chemistries, etc are all great. Things are going very smooth. School has been wonderful for Victor. He'll be getting his first report card next week with straight A's!!!!!!! As for me and Nick, we're enjoying our alone time together while Victor's feeding his brain all day.

By now you all have seen the pictures from Victor's Make a Wish trip to Disney World. We had the time of our lives!!!! Really, I don't think that all the money in the world could every give us a vacation like MAW made possible! Give Kids the World was awesome. I wish we had more time to just spend there. Of course the kids wanted to be in the parks, so every day it was up early and out the door by 9am! We went to Magic kingdom the very first day. That was the one and only time it rained, and did it rain, we got soaked, but we stayed at the park and made the most of it! We didn't get to see the parade, that was a bummer! But the rest of the trip was awesome. We had breakfast with Chef Mickey, that was so much fun. Then we headed off to Epcot...........Ever go Soaring, wow, that was my favorite. And of course Victor's was Mission Space!!!! On Thursday we went to Universal Studios Islands of Adventure. Before we even got into the park we bumped into our favorite child life specialist Shalese. She moved to Fl around Christmas last year for a job at Arnold Palmer. Well what a surprise to see her, chances of that, ha? What a fantastic park! We loved Dr Seuss land, Jurassic Park, The Super Hero Ave, etc. It was there, in Islands of Adventure that I lost my wedding ring!!!!! The good thing is my insurance will replace it! OK enough about that! We also went to MGM and the greatest show in the world is Fantasmic!!!!! Lets just say we were escorted to reserved seating and treated like royalty the entire trip!!!!!! What more can I say, except THANK YOU MAKE A WISH AND GIVE KIDS THE WORLD for the greatest trip ever!

Please continue to pray for our friend Brandon Hoff. Brandon was to have a cord blood transplant last week when the doctor found a lump in his testicle that is leukemia. He also had cells in his spinal fluid and infiltration of his organs. Brandon is now on higher doses of chemo and will be getting radiation to his testicles in hopes of reducing the leukemia down an acceptable amount for transplant. Victor just had another fund raiser for Brandon where he sold lemonade and his hand made bracelets at Mallisee Farm and Unity Fire Hall's craft show. A small portion of the proceeds will also benefit the LLS. Thanks to all who helped Victor raise funds for his buddy Brandon!

Love to all,
Apryle

Thursday, September 14, 2006 9:31 PM CDT

Well we're getting ready for the big trip to DISNEY next week and the funny thing about it is Victor and Nicholas still don't have a clue that we are going to see Mickey. They think we are going to Ocean City to see my aunt Mikki who lives there!!!!!!! Isn't that funny?????? But they are going to be so surprised when I tell them that we've had a change in our plans and aren't going to the beach, we're going to Disney World instead!!!!!!!!!!! So the plan is to tell them right before the limo picks us up to take us to the airport.

This sure is a year of firsts for us, especially Victor and Nicholas. Victor went to his first Steeler game, we took both of the boys to their first Pirate game. Nicholas had his first time at Kennywood and loved it so much that we had to go back a second time! This will be the first time in a limo, first time on an airplane, and their first time in Disney, made possible by Make-A-Wish.........

Victor also golfed 18 holes for the very first time last Sunday. The wonderful part about it was that it was in the 4th Annual Victor Flinko Golf Outing........Thanks to everyone who made the day such a huge success. This was the first year that our family was able to attend the event. We really enjoyed the day with our family and friends, old and new!!!!!!! Our good friend Matthew Kocher who had his transplant 2 months after Victor golfed in Victor's foursome. It was awesome to see those two having fun together instead of in the hospital. Nicholas did have a bit of an accident spilling hot coffee on himself. He has a bad burn on the top of his foot and that's it! The entire 32 cup pot feel and he walked away with one burn. The thing is, while he was crying in pain he remembered going to our friend Jake's birthday party in June. What would make him think of Jake?????? In my heart I know that Jake was watching over our family (and is each day) and Nick was spared any serious burns because of our special angel......

Victor is doing great in school. This week he's put in a full week! And still going. Homework stinks and it's a power struggle between him and I every night. I think that Vic is going to be assigned to homework duty from now on. Victor is going to get his orange belt tomorrow. He's doing wonderful in his private karate lessons.

Victor went to the clinc last week for his monthly check up. Everything is going great. His counts are:

WBC~8,700
ANC~5,000
PLTS~250,000
HGB~13.7

These counts are probably better than the average person! All of his chemestries and electrolytes are within normal ranges as well. The doctor is very pleased being that Victor is still on a good deal of meds for his GVHD. His liver and kidneys are functioning well and his immune function is good, not 100ut strong enough that he's been pretty healthy throughout the past year. We are going to start the tapering process once we get back for vacation.

Victor also had his monthly pulmonary function test last week. His lung function is stable. His lung capacity is about 78-80 This is where he's been for the entire summer. Now that he's down to 10mg of prednisone, we will have to be very cautious while tapering down further so that his Broncholotis Oblertians doesn't flare up. BO is an obstruction in the small airways, caused by graft verses host disease. So far Victor has no scarring of the lungs which is want we have to keep a close watch on while peeling off the anti-rejection drugs!!!!! I am very hopeful that Victor is well on his way to getting better for good!!!!!

Please keep our friend Brandon Hoff in your prayers. He was diagnosed with leukemia June 6th and is having a hard time achieving remission. Brandon will need a Bone marrow transplant as soon as the doctor's are able to get his cancer cells down to less than 5When conventional therapy fails, transplant is the next step. Although he is now responding to the chemo, the range of time has exceeded the protocol guidelines for following chemotherapy alone. Most children are in remission by day 28 of treatment, so as you can see, Brandon's cancer is resistant to the chemo and he will need some of the more aggressive drugs to put him in remission so he can have his transplant.

Thanks for checking in!!!!!! I'll update more when we get back, and have tons of pictures!!!!

Love,
Apryle

Saturday, August 26, 2006 9:33 PM CDT

I want to thank everyone who helped make our "Pamper for a Purpose" fundraiser a huge success! We had a great turn out and still have donations trickling in! I will post a total once we close out the sells with all of our consultants.

Victor is doing OUTSTANDING! On the 19th he went to a pre-season steeler game with Vic. He had a wonderful time! He came home chanting all of the Steeler fight songs. Then this Friday we took both Victor and Nick to see a PGH Pirate's baseball game at our new ball field, PNC Park. They we're a little bored with the ball game, but thrilled about Sky Blast afterword. We were directly underneath where the fireworks were blasted. It was amazing.........

School starts on Monday! Mixed emotions, sad, happy, nervous, scared, you name it! As for Victor, he is ready, more than ready! We went to meet with his new principle, new teacher, Mrs. Lynch and the school nurse on Friday! I am confident that Victor is going to be in great hands with the staff at Holiday Park Elem. but still wish I could be with him...........(just to make sure he's keeping his hands out of his mouth:-)

No new medical news! Victor had his last clinic apt on August 10th and everything was perfect! He doesn't go back until Sept 13th, once a month finally!!!!!!!!! He has tapered down to 10 mg of steroids every other day and that's where I want to keep him for awhile so he can get adjusted to school without event. His gvhd seems to be stable at this dose and I wouldn't want to rouse up those over active cells at this point!!!!!!

We also have big news coming up in September!!!!!!!!!!1 Shhhhhhhhhh, it's a surprise, but we are going to Disney World finally for Victor's Make a Wish trip!!!! He has no clue and we aren't going to tell the boys until that day when the Limo picks us up to take us to the Airport! Victor thinks that we are going to the beach, so shhhhhhhhh, remember it's a secret!!!!1

And that's about all for now, until next time, thanks for checking in.

Love and Prayers,
Apryle

Sunday, August 6, 2006 9:49 PM CDT

WOW~Has it really been 2 months since my last update????? I guess that's what happens when you have 15 viruses on your computer, huh?

Summer has been great to all of us and Victor is doing wonderful. He hasn't been inpatient all summer (knocking hard) and only has to go to the clinic once a month! So sweet!

We've kept very busy swimming in our pool, it's been a perfect summer for that!!!!!!!! Victor is still taking his karate lessons every Friday. The boys are also bowling every Wed on a summer youth bowling league! They love it! We've been able to take the boys to do lots of fun things this summer. We went to Idlewild Park and had a fantastic time!!!!!! Nick had never been on "big boy" rides before, remember he was only 15 months old when Victor was first diagnosed with Leukemia, he's now 4 1/2. We are also enjoying spending time with our friends and family who we've missed out on last summer. Things are going very smooth!!!!!

On the medical front things have been very stable. Victor's GvHD seems to have calmed down a bit even with the slow taper of steroids. His skin looks great and the sun dosen't bother it much, of course we lather him up with lots of sun screen. His Gut issues are also stable. However we continue to keep a very close watch on his lung functions. He was diagnosed with an obstructive lung disease called Broncholitis Obliterians in March. This causes him to get out of breath easily. His case is said to be on the mild side only causing minor issues with streneuous activity. He still rides his bike, plays baseball in the yard and does just about everything that other kids can do only Victor knows his limits and when he reaches it, he takes a break then gets right back in the action. So all in all he's been doing great!

School starts on August 28th, how will I manage???????? Probably with a hole in my stomach. No, I'm happy that Victor will get to go to school and be with his friends! We're going to see about starting him out with modified days, maybe going in the morning and leaving early and then gradually working up to a full day.......It's going to be a huge adjustment for all of us, but one that proves that Victor is well on his way to a better life!!!!

Nicholas is going to play soccer this fall for Plum, he's thrilled!!!!!! And I'm looking forward to having some alone time with him while Victor's in school. I'm not sure yet if Nick's going to pre-school, I did sign him up but the closer it gets, I'm whimping out....... Maybe it's the fear of being alone??????? Nah, more like the fear of Nicholas constantly getting sick, whatever it is, it's causing me to second guess sending him to pre-school. We'll see......................

I do have some very sad news, our friend Jake lost his life long battle with Leukemia and left us to be with Jesus in June, one week after his 5th birthday. His parnets are suffering tremendous pain everyday. Please keep the Lannin family in your thoughts and prayers for comfort and peace in knowing that they will see Jake again someday. Reminds me of the song by Kenny Chesney "Who you'd be today":

It ain't fair you died too young
like a story that had just begun
but death tore the pages all away
God knows how I miss you
all the hell that I've been through
just knowing no one can take your place
the only thing that gives me hope
is I know I'll see you again someday!

It's sad but true. To us it's just a song, but this is what the Lannin's face every morning when they wake up, all day long in a house that just screams his name, and every night when they go to sleep knowing that tomorrow is going to hurt just as much as today!

Which is why my passion is to raise funds for famlies who face a Leukemia diagnosis. This year we are have a Pamper yourself for a Purpose fundraiser in honor of Brandon Hoff as well as the Leukemia and Lymphoma Society. Brandon is my good friend's nephew who was just diagnosed with t-cell Leukemia on June 6th, 2006. Sadly enough we just found out that after 2 months of chemo Brandon isn't in remission yet and will ultimitaly require a Bone marrow transplant. The goal is to achieve remission and then go straight to transplant. Our fundraiser will help the Hoff Family with expenses that come with dealing with this terrible diagnosis.

What: Pamper Yourself for a Purpose~ Come pamper yourself and help us raise funds at the same time. Vendors include:

Cookie Lee Jewelry
Pampered Chep
Jafra
Tastefully Simple
Oakmont Candles
Silpada
Home Interiorers
Creative Memories and many more

When: Sat, August 19th 5pm-9pm

Where: Unity Presbyterian Church in Plum

$5.00 donation includes food, drinks, and a ticket for a chance to win great prizes. To purchase tickets in advance please contact me. Admission will also be available at the door. It's going to be a great event and we hope to see you there!

Thanks for checking in. I'll end for now and promise to update now that my computer works.

Love and Prayers,
Apryle

Wednesday, June 7, 2006 6:59 AM CDT

So it's been a while...........Go figure, ooops......My last update left Victor in the hospital. Well by now, almost 3 weeks later he is home and doing very well!!!!!! He did get his broviac line removed, after three years of having IV access in his chest, he is swimming like a fish! And speaking of three years, June 5th was three years since our lives were changed forever, a day that will be etched in my memory the rest of my life! I must say that it's wasn't easy but somehow our family over came many of the obstacles that come along with a cancer diagnoses. And my son, well he is the most amazing 7 year old boy, he has compassion for others, always thinking of doing for less fortunate rather than himself. I am proud to be his mom.

What brought Victor to the hospital the last time was the vomiting and diarrhea that puts his in the PICU for low blood pressure and high heart rate. The past two times that this reaction happened to Victor we noted that he had ate something containing peanut butter. We did allergy testing and just this week the doctor called to tell us that Victor indeed has a peanut allergy. Even if the test was negative we were going to treat him as if he was allergic to peanuts because he is on steroids and immune suppressing drugs it can alter the results of allergy testing. I am hoping that this is the ONLY reason for the stomach issues that have been the cause of his many inpatient stays in the past, and that he will be able to taper off some of his meds.

We met with the pulmonologist last week and Victor's lung function remains stable. We have to keep a very close watch on the Broncholitis Obliterans, if his PFT test regress more than 5than his treatment will have to be more aggressive to prevent lung scaring and fibrosis. But for now he is doing just fine with 80alues that put him in the normal range.

And of course Victor's counts continue to ROCK! He is only going to clinic about every three weeks, so the last time his counts were done was two weeks ago, here they are:

WBC~12,000
ANC~8900
PLTS~ 258,000
HGB~14

All very normal and healthy.........And speaking of normal and healthy, we got the results back from Victor's one year FISH test and he remain 100ONOR CELLS, all female in orgin!!!! Praise God.

I have many prayer requests which stinks because it proves how real a cancer diagnoses is.

Please keep Jake and his family very close in prayer. He is now on a make shift protocol using high dose chemo to try to achieve remission for good this time. Jake is a fighter, so are his parents, but they need us to lift them up in prayer so God can continue to give them the strength to battle the best.

Also pray for our friend Jenna who relapsed about one month ago with AML. She finished up her Ist round of chemo that was to put her back into remission and this week the family found out that she still has 50lasts in her bone marrow. She started more chemo and along with that comes toxicities, pray for minimal side effects so that Jenna can continue on towards a cure from a Cord Blood transplant.

And now I am sad to say that last night I got a call from one of my very best friends that her nephew was just diagnosed with leukemia. The family is shocked to say the least. Brandon will have a bone marrow biopsy to determine what type of leukemia it is and then will start chemotherapy to put him into remission. Please pray that he achieves a fast remission.

Thanks for checking in and for the continued support.

Love,
Apryle

Tuesday, May 23, 2006 11:15 AM CDT

Where to start the good news or the bad news?????? First I have to say that Victor is doing good NOW, he did have another very scary incident that brought us to the ER, then to the ICU and as I type we are inpatient on 8 north. What happened, well the same old tummy issues, but this time what prompted it was different. We are thinking he has developed a peanut allergy being that the past two times he has ANYTHING with peanut butter he had a reaction that dropped his blod pressure and caused tummy issues. Because his immune system is still immature it will be hard for us to get a positive allergy test so for now we are to avoid any peanut products and all tree nuts (hahaha, it would be hard for us to avoid nuts all together being that we have a full house) So that's the bad news, the good news is...........VICTOR IS LINE FREE! This morning we went ahead with our plans to get his broviac line out!!!!!! Victor is so happy this is the first ime in three years without some type of IV access in his chest! And a year with a broviac which prevents him from taking a normal bath and splashing around. He can't wait to get into the pool! We are all thrilled that we are able to be somewhat normal. Our normal....... Not the same as it was before cancer, but a new normal that we are learning to live with.

While here at CHP we ran into Jake and Kristi. Jake was inpatient again for fever and low blood pressure. Please keep Jake in you thoughts and prayers. Jake is still battling to get into remission and let me tell you he is a littler solider! He has put leukemia to the test! We are praying for a miracle, let it be God's will that Jake achieve remission so that the doctors can compile a plan to cure him once and for all!

We also ask for prayers for Jenna Christner who has relapsed in AML after being in remission for 18 months. She is going to have a transplant (maybe cord blood) Please pray for her second remission and for a donor to be found quickly.

And as always thank you all for the prayers and support during this trying times.

Love,
Apryle

Wednesday, May 10, 2006 9:48 PM CDT

HAPPY RE-BIRTHDAY VICTOR

Wednesday May 10th, 2005 a day that no parent should ever have to live through let alone a 6 year old little boy. At 10:30am Victor received a second chance at living a normal healthy life. He was given this gift from an unrelated cord blood transplant, stem cells from a baby girls umbilical cord. Thank you to each and everyone of you out there who donate blood, platelets, bone marrow and cord blood, without these donations Victor and so many other children (adults too) wouldn't have a fighting chance. We also want to thank all of our family and friends for the unconditional support over the past three years (and counting) Without all of you thing would have fallen to pieces for our family. It would be impossible to name each of you personally, just know that we are forever grateful for what you've all done to help us get through such a life altering experience.

Today was a great day! We celebrated by taking Victor to his favorite place to eat the Village Inn. Maureen Durkin from the Leukemia and Lymphoma Society joined us to celebrate Victor's re-birthday. Then we went to fun fest for some serious arcading!!!!! That was way cool! Victor won 857 tickets and Nick won 642. Of course Victor is saving his so he can get a bigger prize next time we go back and Nick cashed his in for a stuffed puppy and candy! The difference in brothers *ones a saver and ones a spender* Then for the big surprise. We got home from fun fest and daddy pulled in with a go-cart for Vic!!!!!! The rest of the evening was spent with Victor riding the go-cart and Nicholas riding the quad. Nick is thrilled that Victor got the go-cart because now the quad is his!!!! It all works out one way or another.

SHHHHHHHHHHHHH....Big surprise, on Friday we are going to have a small surprise re-birthday party for Victor. Spangles the Clown is coming, she is the clown who helps out with the Pgh Light the Night event so it will be very meaningful having her celebrate with us!!!!!! Victor has no clue when he get home from Karate he is going to have a party, lets keep quiet..........

Boring medical stuff, and some exciting medical stuff also. First the exciting news.....On May 24th Victor is going to be line free. For almost three years now he has had some sorta of central line in his chest (two ports and three broviac's to be exact) He is finally going to have his broviac line out!!!! This is a great way for us to continue celebrating and thanking God that Victor is doing well enough to be without IV access. He is counting down the days to freedom. He can't wait to swim this year. Our pool will be ready and waiting for him and Nick.

Good news about Victor's lung issues. On Monday he had another PFT and his values have increased again. So every month they get better we are ever more grateful that the lung gvhd is not as bad as it could have been. Victor is also tapering down his steroids without event which is a good sign that maybe (just maybe) his gvhd has calmed down. We will watch very closly as we know that there is no set *receipe* for gvhd to follow. Counts, chemestries and all kidney and liver functions are within normal ranges.

Even though Victor has had to endure so much to get to where he is now, we are very very thankful for the gift he was given on May 10th 2005. We know from traveling down this road for almost three years and meeting so many families, that sometimes the out come is the alternative to dealing with side effects, bumps in the road and long term issues, we are lucky to have our son, we are lucky he is in remission, we are lucky to be able to say that Victor is one year post transplant. We are very sad and greive with our friends who have not been as lucky as us.

Again I ask you all to keep our good friend Jake close in thought and prayer. Jake is in the ICU tonight with fever and low blood pressures. I did talk with his mom and she told me that for being in the hospital, Jake is doing well. Although he is not yet achieved remission for his leukemia, Jake is amazingly doing great. We pray each and every second of the day for Jake to be Gods miracle, please pray with us. Jake reminds me so so so so much of Victor when he was four, when he was first dx with leukemia. He also has the same personality that Victor did. Please continue to ask God for a miracle.........

Well that's all for now (you're probably all saying "yeah for another four weeks) I promise I will try to be better about updating!!!!!!! Thanks friends,

Love,
Apryle

Thursday, April 13, 2006 8:02 AM CDT

Almost a month since an update, bad, bad girl!!!!! Ask me why? OK here's my excuse: I've been so busy, a very good kind of busy!!!!!! I'm just going to shout it out: VICTOR IS DOING AWESOME.........He is feeling great!!!!! We are getting out more (of course with the doctor's permission) With the weather getting nice we have gone to the park, riding bikes, the Zoo, and just running around in the backyard playing soccer and baseball has been great. It's amazing how well he's been feeling. He went from c-diff and rotavirus to NO NAP, running around, hanging off the monkey bars, and riding his two wheel bike without training wheels!!!!!!!! Can you tell I'm excited???

First I'll bore you with all of the medical stuff...This weeks counts ROCK: (as with every week)

WBC~10,000
ANC~6,700
HGB~14
Plts~197,000

All normal values!!!!! His doctor told us that he has a very robust new bone marrow, cellular and productive!!! His electrolytes are great as well, drum roll please...........................................................After 11 months of IV fluids, Monday night was the very first night without being HOOKED UP...Huge Huge accomplishment for us!!!! And the news gets better.....For sure now we'll only go to the clinic every other week!!!! We have a week off, YES... Of course I'll be sweating bullets waiting for counts in two weeks but it's all good.

The news gets better yet:
Victor had a high resolution CT scan done to see what percent of scarring he had in his lungs from the GvHD, a condition that the pulmonologist called Bronchiolitis Obliterans. The CT showed NO SCARRING and the pulm feels that Victor's B.O is very mild. We will continue to watch it very closely doing PFT's monthly to catch something quickly if his lungs were to regress. For now he is doing his pulmicort inhaler morning and night and that seems to be helping tremendously.

His skin looks awesome (you can tell in the photo;-) We stopped using all of the creams that the dermatologist prescribed and went to an herbal aloe vera skin treatment! His gut GvHD hasn't been active for awhile now (knocking on wood) He is still on 12.5mg prednisone and his FK506) He also had an eye apt and his vision continues to be perfect. He does have mild clogged oil gland along his eye lashes that is more than likely related to his GvHD, but it's not a problem and the only treatment is warm compresses if his eyes seem irritated.

Can you believe that May 10th is going to be one year post transplant...... I can't say that the year flew by, in fact it dragged on and on and on. Things finally seem to be on track.

VICTOR IS DOING GREAT.....Health, school and physically. He got straight A's on his report card. As a reward I took him and Nick to Fun Fest and we played laser tag, we bowled and played the video games, we had a blast.....He also got a promotion in Karate. He is now a yellow belt!!!! I'll get the pictures up soon, I finally figured out how to re size ( did you see the last picture on this site??? it was Huge) Anyhoo, now that I can re size I'll share more of our great photos with you. Nicholas is going to start playing soccer April 20th, he can't wait!!!! He's been practicing in the yard, he's pretty good!

Now I want to share some great news about our friend Jake. About a month or so I asked you all to pray for little Jake, he was having a rough time and the doctors weren't optimistic about his prognosis. Well Jake is now doing wonderful.......he is truly an example of a miracle. Please continue to pray for Jake, that his cancer continues to die off. Prayer is powerful, his situation is living proof!!!!!!

We also are asking for prayers for Matthew Lamb. Matt is 16 and is not doing well. He has AML and cannot reach remission. Pray for Matt's miracle just like Jake's!!!!!!

If anyone is interested in purchasing a lottery ticket to benefit the Lamb family you can contact me via email. The tickets are $5 and the prize is $1500. The winner will go off of the May 1st PA lottery. This family could really use the extra funds. They don't live close to CHP and Matt has been inpatient for months. They are paying rent at the RMD house as well as all other expenses that go along with cancer!!!!! (yuck) I have a good deal of tickets so please contact me if you are interested in helping!

Thanks to all of you who continue to support Victor in his journey to CURE, you are all our Angels.

Love and Prayers,
Apryle

Friday, March 17, 2006 5:44 PM CST

Just a quick update, Victor has had diarrhea since Monday morning, we thought that it could be related to his gut gvhd but stool cultures show that he has rotovirus AND c-diff. One viral infection and one bacterial infection. He's had c-diff before but never roto...... Now Nicholas is sick with one or the other. His symptoms started last night!!!!! Poor babies.

Victor feels great besides the fact that he has large volumes of diarrhea. We are able to keep up with IV fluids, a nurse is coming every morning to test his blood work, so we are fine at home as long as his symptoms do progress.

Prayers for quick healing for both Vic and Nick!

Love,
Apryle

Monday, March 13, 2006 9:05 PM CST

AND THE WINNER OF THE IPOD SHUFFLE IS..................... Ursula Castaneda.

Ursula is one of my "Online" friends that I meet through my support group ALL-KIDS. Ursula is the mom of little Alexia, who was diagnosed with infant ALL and relapsed while on treatment. The family is from South America and are currently at Duke University where Alexia had an Unrelated Cord Blood Transplant very similar to Victor's type of transplant. You can stop by and wish them good luck and congratulate them on winning the ipod at: http://www3.caringbridge.org/southamerica/alexia/

Victor picked the lucky ticket this evening and we took a picture with our digital camera but we still cannot figure out how to download them onto the computer. As soon as we do, I will post the pictures up.

I want to thank each of you who helped make Keegan the Crusader's fundraiser a HUGE success! We were able to raise $1360 for the Puckett family....Thank you, thank you all!

And by now I am assuming that you all think I am about the laziest when it comes to updating this page (hint, hint) I can tell by some of the guestbook entries! LOL!!!!! I'm sorry for keeping you all in suspense. I have formed this "love/hate relationship with my computer. How to explain this?????????? Well, I get online with all intentions of updating on Victor's condition and then I start to research into all of his medical problem, I get aggravated and then that's that! I love it because it has been my life line for the past three years, as far as support, keeping on touch with friends and keeping them informed about Victor, also being able to access any info that I need to. But it gets very overwhelming because of all of Vic's medical issues.

Things were going great for the past two weeks, that is until we met with the Pulmonologist on Thursday last week! It seems that Victor's rapid breathing and shortness of breath is also the result of chronic graft vs host disease. He is suffering from a condition called Broncholiotis Obliterans. This is an obstruction of the small airways caused by inflammation (gvhd in Victor's case) This can be a very serious problem for Victor. We are hopeful that because his case is mild to moderate that we'll be able to keep the GvHD under control with the increase on FK506 (anti-rejection drug) and also the addition of another anti-rejection drug Cellcept. Victor was on this for his acute graft vs host right after his transplant. He is also on a steroid inhaler pulmicort and an anti biotic to prevent any infections that could cause more scarring of the lungs. Victor is going to have a High resolution CT scan of his lungs done to see the extent of the scarring.....But from the PFT testing and the fact that he is still very active, the doc was able to diagnose his condition as mild to moderate. Good sign for now. Victor will continue to have pulmonary testing once a month to keep a close eye on his lung function. We are hopeful that things will improve rather than progress.....


As Dr. Goyal would put it "Victor has a very robust bone marrow" So his counts continue to rock:

WBC~17,000 (Yikes, I did get a bit nervous about this, but Dr. Goyal looked at the blood side and said the above with the addition "All healthy steroid induced cells"

HGB-13.8
Plts-207,000
ANC-13,000

We hope that with the addition and increase of immunosuppressant drugs that his counts still remain in the normal range. Dr. Goyal feels that we have lots of room in this department.

Lets talk about "drive, will and determination" all qualities that Victor has and then some. Over the weekend he insisted in walking on the treadmill for 70 minutes Sat and 60 minutes on Sun. He didn't feel the need to stop, it was no bother to him at all. Then he worked out with his JR weight set that Santa brought him. Hey I never thought of this, He is on steroids, he is lifting so he is going to be the next Jr Mr Bodybuilder Champion! Except his tummy is a bit on the round side! (LOL) He also loves karate. Victor will test for his new rank in two weeks, he is more than ready for his next belt! Another activity that he is enjoying is riding his scooter, when the weather permits. He did wipe out last week and got a nasty bruise on his shin, me of course I freaked out when the bruise popped out right away. But when you think about it, what mom in her right mind (and I said right mind because that is something that I'm not) would keep picking up her son's pant leg to see what the bruise looked like, just about every other minute until bed time! Never the less it has already started to fade!

I ask you all again to pray for all of our friends who are battling cancer, side effects of treatment and transplants. Our friend Jake is in need of many prayers. When Victor was in for his transplant I asked you all to say a prayer at 10 am and pm for Victor, now lets group together and do the same for Jake so God is sure to hear our plea for a miracle! Jake doesn't have a website so if anyone would like for me to relay encouraging words to the family I would be more than pleased to do so. The are holding together, strong, under the circumstances.

Also prayers for Keegan, as he is getting ready to go inpatient for his next round of high dose chemo. He is also going to have surgery to have his defected port replaced.

Prayers are welcome for all of our friends!

Thanks for checking in, more to come soon.
Love,
Apryle

Sunday, February 26, 2006 2:54 PM CST

We're HOME!!!!!!

We got out Sat afternoon. Victor is feeling great! Almost like this never happened...... It's bewildering to us and the doctor's why things happen the way they do for Victor. As quick as it comes on him, that's how fast he's better........

He had an Upper GI and Small bowel follow through done on Friday to see his mobility and everything came back normal. All of the cultures are negative for any infection, so even thought this is typically not the way chronic graft vs host disease presents, it's more than likely the cause of Victor's gut attacks.

Victor's counts continue to be rock solid!!!

WBC~8,700
ANC~5,000
HGB~12.2
Plts~187,000

These are all very normal blood counts. Although his electrolytes were thrown for a loop with the stomach issues, they are starting to bounce back to normal.

One huge down fall to this recent step back is Victor is back on 20 mg of steroids. He is hungry all the time. Pretzels are his latest craving, he has to have them nonstop!!!!!! He is also very very moody........Ugh, it's hard to please him right now. Nothing is right, nothing is wrong, it's frustrating for him.......And Nick doesn't make it any better. He's what Victor calls "the annoying little brother that "I" never was" He has a point, I still try to tell him to take it easy on Nicholas, that's how all four year old little brothers are.

Throughout his hospital stay he was amazing as usual, never complaining, just making the very best of the situation. If the insurance company could have seen him they would probably deny all claims stating " You call that a sick kid?" He was running the hall, trying to ride on his IV pole, playing in the playroom and just having a good old time. He even made a new friend, a little baby who was in the hall with his mom and grandma, Victor was intrigued with him and was asking his mom " Why is he here?" "I hope he gets better" and then he was happy to find out that the baby was just two doors down from his room. He told the mom " Good luck, I hope he gets through this!" We were laughing (the nurses and I) calling his the 8 north advocate!!!!!

And then the most disappointing news of all..........Our good friend Jake has been battle with ALL since he was 11 months old. He's now 4. He relapsed in June 05, had a transplant Nov 05 and has since relapsed again. His doctor started him on chemo in hopes to put him back into remission. On Monday I found out that the chemo didn't work and Jake still has leukemia cells in his blood. He went home on Tuesday and is now enjoying his Make a Wish trip to Disney. Please keep Jake in your prayers that the doctors can come up with a knowledgeable plan to help Jake beat this.............

We are also holding a fundraiser for Keegan Puckett. He is our good friend in GA who just relapsed in January. I have earned an iPod Shuffle through raising funds for the Leukemia and Lymphoma Society last year. I am raffling the iPod off for $10 a ticket. All of the proceeds will go to benefit Keegan's medical expenses. If you are interested in purchasing tickets or if you would like to sell a few you can email me and I will get the tickets to you ASAP. You can follow Keegan's progress as he battles his way to a second remission and then continues to fight for the next two years with high doses of chemotherapy. His website is www.caringbridge.com/co/keegan.

Me.......I'm just happy to be home. Drinking my own coffee, washing clothes, watching the kids play (or fight) and eating normal food!

Thanks for checking in.
Apryle

Thursday, February 23, 2006 9:50 AM CST

Still here............(sigh) but doing well and things have stablized. Victor is still having loose stooling, no tummy pains but very watery so he's being monitored to make sure his body isn't put under such stress again from dehydration. Because he's been on steroids for so long his body isn't producing the natural cortisol that it should. This is what caused his body to react so severe during this past incident. He is going to remain on hydrocortisol for a while being that his level was so low and his body was so stressed.

His doctor also ran a few "fairly new" tests on his stool and blood to see what level of inflamation is going on inside his body. This could be a very good indicator of graft vs host disease. We'll have to wait a few days for the results to come back. In the mean time his stool did show a large degree of glucose which means his body is not digesting sugars. He had this problem with his acute gvhd and we have been very diligent about what he eats not to irratate his tummy. He was doing extremely well so we started to ease up on his diet in January and February. I guess we pushed the issue. We are going to consult with GI today and Victor is going to start on some sort of sucrotate (????) drops. This will help him absorb sugars, lactose etc.....things that have been omitted from his diet since June 2005. Because these drops have been known to cause allergic type reactions, the doctor wants us to hang out today while Victor gets his first few doses.

Counts, chemestries, etc are all back to semi normal ranges. So tomorrow we maybe going home.......... Victor is fine being here, he has fun, he gets to go to the play room, yesterday he had private time and was able to see the traveling museum presentation on Indians, ironic because on Monday when all of this started he really wanted to go to the museum, kind of worked out! And yesterday "Bell" from Beauty and the Beast was here at CHP, she came in to see Victor as she was visiting 8north. That was cool.

Thanks for the prayers and support and for continuing to check up on Victor,
Apryle

Tuesday, February 21, 2006 3:10 PM CST

Victor is in the ICU at Children's Hospital of Pittsburgh. yesterday he woke up in the AM feeling great, he ate breakfast and we were on our way to his scheduled clinic check up. He was feeling so good, he wanted to go to the museum after. Well.............we weren't even 5 minutes in the car when he asked for the bucket, his tummy was upset. I pulled over, he vomited, and we continued on. He continued to complain all the way to the clinic and threw up several more times. We barely made it up to the floor when he had to "GO".

The PA started him on fluids right away, cultures done etc........ but that's about it, no one came back in the room to check on him for over one hour! He was very tired but we thought that was the result of the kytril and morphine he got for the tummy pains. Something more was wrong, his skin looked modeled, his lips were pale and his finger tips started to turn blue! Victor's blood pressure was crashing! It was dangerously low at 56/33..... I called the nurse into the room, she called the doctor and within minutes a code "c" was ordered. 20 medical professionals were in the tiny clinic exam room working on Victor!!!!!! A perpherial IV was inserted and fluids were being pushed into him by two doctors. All the while Victor was so proud that he could count by "2's" Yes, he was not the least bit worried that so many nurses and doctor's were in his room, he just wanted Shelia the IV nurse to see how good he was at math!!!!! Everyone in the room was frantic except for Victor!!!!

When his pressure wouldn't stablize with over one liter of fluids, he was moved to the ICU for more intervention. First started on intermittened doses of hydrocotrizone and then a continious infusion after his pressure would not hold. His calcium, magnesium, potassium and albumin were all very low and he needed to get infused with each.

Through the night he remained on the continious hydrocortizone and his pressures are finally back to normal. He will be moving to the hem/onc floor this evening.

So far all of the blood and stool cultures are negative for infection, so GvHD again and this time while on 10 mg of prednisone. The doctor wants to order another GI scope but we are going to decline if all cultures remain negative. Victor has been scoped twice and both times the results were inconclusiove for GvH, but outward symptoms were very diagnostic of GvHD.

I'll update once we get into a room! Thanks for the support,
Apryle

Wednesday, February 15, 2006 10:22 PM CST

February 17th UPDATE: 100 PERCENT DONOR CELLS


Well I can't say that the delay in posts is due to nothing going on, in fact I wish that was the case.......Victor is doing fine but not without event!

First, Happy Valentine's Day to all. We love all of you who have shown us the true meaning of friendship, caring, compassion and unconditional love and support. I often stop and breathe in the fact that we could not have got through this summer (heck the past three years) without such a wonderful support system backing us.........When I see other families in our situation who are struggling with the stressful emotions of cancer, then relapse, or other disasters, It hits home for me. Being a part of ALL-KIDS(my support group for kids with the same diagnosis as Victor) I've met tons of families and believe it or not there are so many out there who are in the battle alone!!!! So I have decide to do a small fund raiser for one of the families who are having a tough time right now. Through raising funds for the Leukemia and Lymphoma Society, I earned an Apple iPod Shuffle. I've decided to raffle it off and donate proceeds to good use, to the Keegan the Crusader medical fund. Keegan is a six year old who was diagnosed with ALL around the same time as Victor. Last month he relapsed in his spinal fluid. His family lives in Georgia, while his extended family and friends are in CO. You can visit his caringbridge site at www.caringbridge.com/co/keegan. The tickets for the raffle are $10 each, if you are interested please contact me at the email address below. I plan to sell 100 tickets and if all goes well maybe more!!!!!!!

And now on to Victor's update. I last posted about Victor's repeat MUGA scan, NORMAL!!!!!!!!! It seems that whatever damage was done has repaired already. He also re did the PFT test. This is done to see the lung capacity. This test is still off, but it did get better since early November.

Victor was in the process of tapering off steroids, that didn't last long. His gut GvHD started to flare up while he was on 2.5 mg per day, so he is back up to 10mg now and will probably stay at this dose for a while in hopes to keep the GvH at bay and burn out for good! I know this is going to be a long battle for Victor, but I wouldn't trade it back for cancer!!!!! NEVER! Also, the lung issues are more than likely a result of GvHD. He was having issues with rapid breathing and getting winded very easy back in November before he was dx with chronic GvH and put back on steroids. Once he started this treatment the breathing quickly resolved. Now that he weaned down, rapid breathing and winded started back up!!!! We are hopeful that the steroids help again. We have an appointment with a pulmonologist on March 9th to get another perspective. Victor's skin also flared up with the decrease in steroids. We are going back to the derm on March 1st to see what other options are out there to treat skin GvHD. So as you can see, graft vs host disease can effect just about every part of the body. Skin, nails, lungs, gut, liver, mouth and so on...............

Victor is also back on blood pressure meds. As long as he's on anti rejection drugs and steroids we can count on his bp being high. We are able to keep it low with Norvasc once a day.

Lets see, what else is going on?????? Oh, Victor keeps busy each and everyday as I state in each update! He is busy at the clinic on Mondays, Tuesday morning is PT and OT, then lunch, nap, and up for school at 4pm... On Wed morning we try to do something fun, like bowling or lunch and toys r us, then it's home to nap before school, and then Sunday School. Thurs PT and OT in the morning, school at 4. And Friday morning we sleep in, do something fun and then Victor has his private karate lesson at 4pm. On the weekends we lay low just because most of the population is out and about on the weekend and we still try to avoid crowded places for germ reasons.

Oh blood counts have been great, this is a copy of this weeks labs:

WBC~7,800
ANC 5,000
HGB~13
PLTS~187,000

All in the normal ranges as with his kidney and liver functions. In fact kidneys are getting better and better each week. All of his chemistry's and electrolytes are good so things in this department are moving in the right direction.

This week was Victor' 9 month post transplant evaluations. We are waiting on the results of the FISH testing. This is where they can see what onor cells Victor is. We are expecting nothing but 100t this point!!!!!!! Just say a few extra prayers that he's all female..THANKS!

Also keep praying for the many, many kids who are facing the battle of cancer, relapse, transplant and other illnesses. Prayers are always needed. Remember if you want to help out a family that you know in need, JUST DO IT, don't ask them, they'll probably tell you "nothing" but just do it anyway! Trust me, ego's exist even while a family is under such stress!

I promise that I'll update more often!!!!! Thanks friends!
Love and Prayers,
Apryle

Sunday, January 22, 2006 9:26 PM CST

A good friend of mine has coaxed me into sharing a touching story about my amazing son with all of you who check in on him.

Victor has been blessed with the gift of compassion, his heart is bigger than you can even imagine for a 7 year old. Maybe it's because he's been forced to mature faster, or because of all the kind and thoughtful things that have been done for our family. Whatever the reason he is truly my inspiration.

Here goes:
We spent 72 days in the hospital, from May 2nd until July 13th. We can home for 2 weeks and ended up back in for fevers that lasted another two weeks. We finally came home the beginning of August. Soon after we settled in a terrible disaster hit, Hurricane Katrina. Victor would hear family member discussing the tragedy and he started to ask questions?????? Why did that happen, where are all of those people going to live, how will they get money to buy food and so on......... I did my best explaining to him without putting such a burden on a child who's already had so much stress to deal with. The next thing I know Victor was in his room with his piggy bank dumped out on his floor. Mind you, this piggy bank was chuck full and it's not a small bank, it's the size of a football. When I asked him what he was doing with his money this is what he told me: "MOM, I want to do my share, I want to give my money to those families who lost everything" And without questioning his motives, I helped him count up his coins, together we wrapped $182, I added to it to make an even $200 and away we sent it, to help a family we knew in the New Orlens area. And he didn't stop there. Because he was so generous with his own money, his pap and gram and his mimi and pappy gave Victor coffee cans filled with coins to replace the ones he sent......What did he do, he asked how he could help other people. So I told him about Project Bundle Up, he donated to them, he sent money for the Turkey Fund sponsered by the Salvation Army and he donated a little more directly to the Red Cross. Never spent a cent on himself. To top it all off, what was left over, he wanted so badly to buy his dad a Christmas gift with "his own money" and he did just that........

He is currently saving up again. Every penny he finds goes right into his piggy bank. He is also making small arts and crafts and selling them to whoever comes to our house for $1 each. He's going to help raise money for this years Light the Night walk to benefit the Leukemia and Lymphoma Society. And he's already talking about all of the Koolaid stands that he's having this year!!!!!! What an amazing young man and I'm honored to be his mother.

Now onto the boring medical stuff. This weeks clinic visit went well. His counts were great:

WBC~11.8
ANC~8,000
PLTS~186,000
HGB~13.8

His chemestries and kidney/liver functions are also good. He is still tapering down on prednisone. He is also off the blood pressure meds, we know that was gonna happen as we peeled off the steroids. We are still trying to get his anti rejection med at a theraputic level, so again this week the dose was increased. For now his GvHD seems to be under control. His skin is still not clear, but it's not getting worse. He is having no issues with tummy cramping. I did notice that his nails are starting to split again, to avoid snagging I try to keep them very short.

Tomorrow he will go back to the clinic for an exam, IV antibiotic pentamidine and he is going to Presby for the long awaited MUGA scan to see why his ECHO showed a decrease in the muscle wall back in November. Victor is coming up on 9 months post transplant, which is another milestone to cross. He will redo the PFT's and another FISH test will be done to confirm that he's nothing but 100% donor cells.

Last week Victor asked his doctor when he could start eating at resturants and when he could start having play dates????? He was granted both wishes!!!!!!!! We left the clinic and went to the Village Inn for lunch. Victor came home and called his good buddy Mark to come over to play. And they did just that on Sat....... Of course I'm nervous, but I've decide it's time to put some of my fears on the back burner and let Victor do a little more. It was so good seeing Victor playing with someone his own age, I haven't seen him being that playful little boy in months!!!!! Not that he's not active at home, well you get the picture!!!!

This week is a full schedule for Victor. Clinic Monday, PT and OT Tues and Thurs, school Tues, Wed, Thurs, Sunday Wed night, and karate on Friday!!!!!! Whew, I'll need a drink by Friday night!

Nicholas is doing great. He will be 4 on Feb 1st. I am enrolling him in preschool next year, but he's not liking the thought of that at all!!!!! Nope, he said he's not going to school. I even tried to tell him that his good friend Lukey will be in his class, and Nope he's not going to school! I think by fall he'll change his mind. He does want to play soccer, so I'm gonna sign him up for that. He so wants a dog, just not yet...

That's all for now, I'll update this week,
Love,
Apryle

Monday, January 16, 2006 8:23 PM CST

Yesterday was Victor's 7th Birthday! Here is a brief history of his childhood:

1. At the age of 4 Victor was diagnosed with leukemia
2. At the age of 6 Victor's cancer relapsed in his spinal fluid
3. In April of 2005 Victor received radiation to his brain
4. May 10th 2005 was the Re-birthday of Victor, he recieved a Cord Blood Transplant at CHP
5. Victor spent 72 days in the hospital for grade IV graft vs host disease
6. November 2005 Victor was diagnoses with chronic GvHD of the Gut and started on treatment plan
7. January 15th 2006~Victor turns 7, he is a three year cancer survivor

I would like to say that things have been uneventful, but not so. Victor had a small flare up of his gvhd on his birthday of all days! He had terrible cramping with vomitting and stooling. Thankfully this episode only lasted a few hours and Victor was able to enjoy his birthday at home. With his immune function still not up to normal, we had a few family members over to celebrate. When this is all over with we are going to have the BIGGEST BASH ever.........

Clinic last week was good, counts rock still:

WBC~10.2
HGB~13.8
PLTS~196,000
ANC~6000

All normal as well as his electrolytes and liver/kidney functions.

Friday Victor did go to his first provate karate lesson since the transplant, he remember most of his instruction, he can't wait to go back!!!!

He is now working on a project for with Sunday School Class, stuffing heart pillows for the "Smaller" victims of Hurricane Katrina. He has 15 pillows to stuff. The pillows will be sent this spring. A total of 1500 pillows were done.....20 by Vic.

Thanks for checking in,
Love,
Apryle

Saturday, January 7, 2006 8:30 PM CST

Happy New Year, a BETTER new year. At least that is how we are going to approach it.

My last update was alot of emotions, feelings of pitty and frustration all in one. From time to time everyone needs to get things off their chest, just write it down without having to explain to others why you feel the way you do. I write in this journal for all of you who check up on Victor, but also for myself, it helps me to say things that I try not to complain about (like hair, skin, chubby tummy)that DO bother me. I'm famous for telling Vic not to worry about the "smaller" issues, when in fact I'm probably worrying just as much as he is. The difference is that I try to put it in the back of my mind so I can deal with the issues that come up each day. Sometimes those little things add up and I break! This is a very long process, 8 months is just the beginning, but we will all see the light soon.

Now on to Victor news! He has been doing pretty good this week. His blood pressure is on the way down with the Norvasc on board. He has weaned down to 12.5mg of steroids a day, so as he weans more his pressure should drop alone and then we can D/C the blood pressure meds.

He did have some pretty painful cramping of his fingers this week. It brought tears to his eyes and took a few minutes for the cramping to stop each time it happened. I called the clinic and was advised to use a warm pack and as long as the cramping didn't get worse that it would be ok to bring him in the morning for his scheduled visit. The doctor looked closely at Victor's chemestries and bodily minerals to make sure their weren't any inbalances. His blood work looked better than it has in a long time. And his counts still continue to rock:

WBC~10.8 (which we have learn to accept as his baseline)
ANC~6000
PLTS~196,000
HGB~13.3

All in a normal range! Victor had his first eye exam post transplant. His vision is great and he has no signs of cataracts (common post radiation). He does have clogged oil glands along his eyelashes which is causing him to have dry itchy eyes. We will use a steroid eye drop twice a day for three weeks in addition to warm to hot compresses over his eyes. This should help open up the glands and moisten his eyes better. His tear production is fine (we can see that by the steroid tantrums that he throws LOL.)

Victor is feeling great and has tons of energy, he continues to have PT twice a week as well as OT twice a week. He gets home schooled by his favorite teacher in the world Miss Wilkie (who, if we could, would be his teacher until he graduates!) We also got the OK for Victor to start back to private karate lessons! He is so so so excited about it!!!!! He is going for the first lesson this Friday....

Another wonderful person who has become a VIP to Victor is his Sunday School teacher. Ms Jennifer comes to our house once a week to teach Victor the lesson that the children learned in Sunday School. Jennifer takes time out of her busy schedule to help Victor stay involved. She is a huge role model to Victor!!!!!! (And Me)

So as you can see, even though most of our time is spent at home, we are very busy, especially Victor. It's good to stay on a structured schedule, for us all!

Thanks for the concern and support, and for checking up on Victor. Alsofor being my shoulders to "write on" during the times when things seem never ending.

Love,
Apryle

Thursday, December 29, 2005 8:36 PM CST

7 1/2 months Post Transplant: When will things settle down?

I know that we weren't given a "day of improvement" schedule, but man, how about some relief? I guess things aren't always what they appear to be looking in from the outside.

For instance, how many 6 year olds do you know who have high blood pressure? Victor is now on daily blood pressure meds(Norvasc) to help control his very high BP 140s/100s. Imagine, my 71 year old father in law was on Norvasc!

Oh yeah, how many kids do you know who have to get hooked up at night before they go to bed????? Victor is still getting 12 hours of IV fluids throughout the night, which has him and I up at least three times to go potty.

How many of you have to tell you child that this year we won't be able to have a birthday party, or cake, but we'll make up for it next year????? Get real, a soon to be 7 year old dosen't want to hear that, especially that he can't have cake! How sad when you kid reminds you "Mom, my birthday's soon, one problem, I won't be able to eat my cake...." Victor's graft vs host disease has totally distroyed his stomach, he can't digest sugars or lactose, which makes finding things to satisfy a "Steroid Kids" diet almost impossible.

Who has to sit and think " Is his hair ever going to grow back in those bald spots? When is his face going to clear up? Why is this happening to HIM? Hasn't he already gone through enough having cancer????? I thought the transplant was going to make him all better?????

It's hard to stay positive, somehow I do! God gave me the strength and courage to deal with all of this and I will be fine. I want my son to be "fine" too!

Apryle

Sunday, December 25, 2005 11:31 AM CST

MERRY CHRISTMAS!!!!!

So it's been well over a month since my last update and lots have happened, some good, some bad! For the most part things are moving along pretty smooth, with a unexpected bump here and there.

November was hard, Victor had periods of terrible stomach cramps, and vomitting. We were thankful to be home for Thanksgiving, but ended up back in CHP the Sunday following the holiday. This was the third admission in four weeks for tummy issues. During this stay we were able to put together a treatment plan with the doctors. We consulted with a new doctor at CHP in the HEM/ONC group and he advised us to pursue treatment for Gut GvHD. Victor was then started on 20 MG of steroids a day for two weeks, following with a very slow taper of 2.5 mg per week. With in days Victor was feeling much better. His skin was clearing up, his nails stopped splitting vertically, his rapid breathing stopped, and most of all his stomach was healing and he was eating again. We are now pretty sure that with such drastic improvement on steroids that most of these issues are chronic Graft vs Host disease related. Of course we know that with steroids comes lots of drug related problems. The first and is the eating, non stop, and cravings for certain foods. Then we get the round, pertruding tummy and moon face. Next and more serious is the steroid induced high blood pressure, which has us monitoring Victor's blood pressure several times a day. He does require blood pressure meds as needed. I can give him a drug that is placed under his tounge and within minutes it is absorbed into his blood stream and lowers his pressure. We are also watching Victors gluclose very close as he is up and down with his sugar levels and he is not eating ANY SUGAR AT ALL DUE TO HIS STRICT GI DIET. That's Ok with him because he is craving salty foods which is very typical for those on steroids. Over all he is doing good and we are happy to be "Home for the Holidays"

I must say that this year has been very hard for our entire family. The holiday spirit is low, and the effort that I put towards today was all done with extreme exhaustion, I did it for our children. Of course they are having a wonderful time, tons of toys, games, and noisy things (more advil please) and don't realize my grief, I am pretty good at hiding emotions. With Victor not able to eat cookies and candy, I did no baking, that is something that I love to do! I may not be able to cook all that great, just ask Vic, he'll tell you all about my struggles with our Thanksgiving Day Turkey, but I love to bake, that's something that really gets me into the holiday spirit. Also making candy, didn't do that either. And then we weren't able to get a real tree this year, huge bummer for the kids!!!! We have a pretty lame pencil twiggy thing in our game room, but the kids did a wonderful job decorating it, and Victor even strung popcorn.

The kids did get a special visit this year from Santa and Mrs. Claus. The came to our house with gifts for all! It was so cool! Thanks Santa!!! I got some pretty nice pictures, as soon as I figure out our new internet I will put them up!

That is another reason I haven't been updating, we switched to Alltel our new email address is vicnick@alltel.net I still am not used to it.

Thanks for checking in! I'll talk to you all soon.
Apryle

Sunday, November 20, 2005 8:06 PM CST

Day +193

Well, we got the preliminary results from the biopsy and from the GI doctors perspective, it looks like Victor had a *nasty virus* but not CMV!!!!!! And also not graft vs. host!!!!!!! We are so very happy about this, but also frustrated because this is the second time in one month that Victor has suffered the same symptoms. In regards to the ulcers in his colon, they are very shallow and more than likely a result of the infection and not Colitis? Someone jumped the gun here, those are big words to use not knowing for sure..... The plan is to go home tomorrow as long as things stay stable.

The renal doctor was around today and he decided that Victor no longer needs to be on floronif acetate. They will be keeping a close watch on Victor's kidneys but for now it's not necessary for him to take this drug! And all of Victor's electrolytes are stable except for his Magnesium. He did need a Mag infusion last night, but this is not uncommon. But everything else is looking good.

Counts are good as well:

WBC~11,000
ANC~6490
HGB~10.7
PLTS~145,000

These are all very normal blood counts! So overall things are looking up and we should be out tomorrow!!!! Keep your prayers coming!

Thanks,
Apryle

Thursday, November 17, 2005 4:31 PM CST

Day +190

Today Victor had his GI scopes done to see what caused the sudden onset of stomach problems on Monday. The scope showed that there are ulcers throughout Victor's colon and also some gastritious in the stomach, we will have to wait for the results of the biopsies to see what caused these problems. It could be several things, one being CMV, the other which is on the bottom of the list is GvHD. One very good thing is the CMV antigenima that is done on the blood work was repeated (this is the test that showed Victor had one positive cell on Monday) came back negative today!!!!! We are very happy about that, but until the biopsy proves that Victor doesn't have CMV in his intestines, then he will continue on the anti viral drug gancicylivar to prevent a major infection!!!

Victor's blood counts are great:

WBC~12,000
ANC~ Not sure today
HGB~14.6
PLTS~215,000

Of course all of Victor electrolytes are out of whack as well as his blood chemestries. And his kidneys are not functioning up to par. We consulted with a renal doctor today and it was decided that Victor start on a drug to help his kidney filter better. (not sure of the name yet) The thought is that all of the low CO2 issues in the past are the result of his kidneys absorbing the bicarbonate that his body produces therefore causing the need for Victor's lungs to breath faster?????? This is called renal tubular aciditosis, which I will be looking into more, but for now I am just so overwhelmed with everything else. One thing at a time, one day at a time, one hour at a time! OVERLOADED is the term!!!

I think for sure we will be here through the weekend and into the beginning part of next week. We can do it, we did it for 72 days before, what????

As for Victor the champion, well he is feeling great! He ate for the first time today, he did PT and is just a bundle of joy!

I'll update more when we get the biospy results
Thanks for checking in,
Apryle

Tuesday, November 15, 2005 9:17 PM CST

Day +188

Today we found out that Victor is negative for C-diff, which is good that the infection cleared up but bad because now we are not sure why he had another sudden onset of vomiting and diaherra.

Victor is feling well today and his condition has calmed down trememdously, which is a great sign!

One of the tests that was done on Monday at the clinic was a blood test to check for CMV virus. This test is done weekly to make sure that the virus that resides in Victors body remains dormant. Yesterday the test showed that the CMV antigen is present in Victor's blood again. The good thing is that it is at a very early stage if the virus is active! On Thursday Victor will get an upper and Lower GI donw to see if the CMV virus is what is causing the tummy issues. We are hoping that this is not the case as CMV is hard to treat and will require Victor to be on an anti-viral drug through his IV. With this comes the toxicities associated with liver and kidney functions. Victor will need to be monitored closely for quite a while. We are not sure how long this hospital stay is going to be!

As for blood counts, they are on the mend! This mornings labs were all out of whack, but he has stablized this afternoon back to his normal:

WBC~9000
ANC~4500
PLTS~170,000
HGB~11.6

Please keep Victor in your prayers that his body is able to help fight off the CMV virus and that it is not the cause of the gut problems!

Thanks,
Apryle

Monday, November 14, 2005 10:31 PM CST

Day+187

I know, I need to be better about updating this site. I guess I have a lot to tell since Nov 3rd, the last time I posted!

Victor got his new broviac line placed that day and was to go home the following morning if all went well! Wouldn't you know it, he woke up Friday morning with a low grade fever that kept him inpatient for another day. He was discharged Sat and was feeling fine.

The doctor put him on a 14 day course of oral anti biotics specific for c-diff, the infection that he tested positive for, the reason for the visit to the ER on Halloween. The med is rough on the stomach, which has decrease Victor's desire to eat much over the past two weeks. Other than that things have been decent at home! That is until today!!!!!

Victor had his usual Monday morning apt at the out patient clinic for blood work, chemestries, drug levels and a complete physicial exam. He was also to have his MUGA scan done today to see the extent of damage to the left ventricle of his heart. That was at 1pm........We never made it! He didn't leave the clinic. He had the same exact sudden onset of vomiting and loose stools. This time much worse than on Halloween. He couldn't control himself. It was awful! And,uh, I tell you like nothing I have ever seen before! Out of my 6 year old son! Bloody tissue, just terrible. He was admitted to the floor for close monitoring of his chemestries to make sure that his body stays hydrated. Things have since calmed down trememdously.

The doctor rechecked Victor's stool for c-diff, and also ran other infectious tests to see if it is possibly another bug causing the problem this time. We are also going to consult with the GI doctors to see if they feel the need to scope Victor's colon and esophagus. No we really don't want him to have to endure yet another procedure, but we would like to get to the bottom of why he is having so many problems with his GI track.

So it looks like we will probably be here for a few days! Please keep the prayers coming for Victor and also some of our friends who are dealing with rocky roads as well.

Our friend Keegan had a spinal tap done two weeks ago and the doctor seen a few leukemia cells in his fluid. This is the same type of relapse that Victor had, only Keegans is not ruled a relapse yet because the number of cells present is too low. His family has had to wait all week, over the weekend until tomorrow to get the results of more extensive testing that was done on his fluid. We are hoping for a miracle that the doctor's will call his mother, Audra tomorrow and tell her it was all a mistake that the cells are not cancer! But the fact is, the pathologist remains positive that the 3 cells he seen were in fact leukemia cells, we just hope that they are not detected this time around, if that makes sense, I know that the family is very confused right now as well. They don't want to wait if this is a relapse, yet they are not willing to just jump right into relapse chemo without 100% proof. Please pray for Keegan and his family as they await tomorrows results!

Thanks for checking in and I will update as soon as we have a clue as to what is going on with our baby!

Love,
Apryle

Thursday, November 3, 2005 9:36 PM CST

Today Victor had surgery to take out the disfunctional broviac line and replace it with a new one. All went well with the procedure and the new line works like a charm!

Victor is feeling much better and will be going home tomorrow if things continue this way through the night. He is able to eat and keep it down and the trips to the bathroom have calmed down drastically. He will go home on an anti biotic specific for c-diff.

His counts and labs are all back to normal:

WBC~8,000
ANC~4500
PLTS~180,000
HGB~12.3

Next week we will reschedule the PFT and the MUGA scan to understand more about the recent breathing issues and muscle damage to the heart.

Thanks for all of the prayers and words of encouragement, you guys are the greatest!

Love and Prayers,
Apryle

Tuesday, November 1, 2005 6:47 PM CST

Well,PFT testing that was scheduled for today was canceled due to an unexpected visit to the ER that turned into a true Halloween nightmare in the ICU.

Victor started to have frequent visits to the bathroom yesterday morning, by 2 pm he was crying that he had tummy pains, in the bathroom with loose stools and vomiting. I called the doctor and they wanted to see him at the ER.

He wasn't running any fevers, but by the time we got to CHP he really had to go........This time he had dark red blood in his stools. He was dehydrated and needed lots of IV fluids. His heart rate was in the 160's and his blood pressure was low. We were told that his body could be in septic shock and that he would need to be evaluated by the ICU team. Cultures were drawn from the line on his blood as well as his stools. And then his counts came back.......

WBC~19,500 (what the ....)
HGB~15
PLTS~246,000

Floored by the white count, we almost went into panic, but the doctor had looked under the blood slide and said that the cells indicated either inflamation or infection. Two hours later after a good deal of IV fluids, blood pressures returned closer to Victor's baseline as well as his heart rate. Victor was moved to the ICU to be closely monitored through the night. Labs were done again once we got to the ICU and we were very happy that the white blood count returned to Victor's normal of 10.8.

Victor did great through the night and he woke up this morning feeling fine. The doctor decided that from and ICU stand point he was stable and he could be moved to the Hem/Onc floor. We did find out that the first stool culture that was done in the ER was positive for C-Diff, a bacterial that thrives in the intestines.Immune suppressed patients are very susceptable to C-Diff. The doctor still wants to keep a close eye on Victor because of his past history with acute gut GvH. If things don't improve with treatment for C-diff than more than likely Victor's GvH has flared up and his anti rejection drugs will have to be increased again, with the possibility of being put back on steroids.

To add fuel to the fire, the ICU nurse pushed too hard on Victor's broviac line and popped it. Because he only had one working line a pic line had to be put in Victor's arm. We now need surgery for a new broviac, that will take place on Thursday.

And to top it all off, Victor now has a terrible headache, just vomited, and feels yucky again. He did manage to eat some today, but not much. We will see how he feels in the morning and hope that the headache goes away and is just related to being tired, not eating much, and the whole picture of what is goin on.

Please keep Victor in your prayers tonight so that he can jump over this hurdle just as he did in the past!

Thanks,
Apryle

Sunday, October 30, 2005 7:42 PM CST

Day 171
Blood Counts:

WBC~12,000
ANC~7300
HGB~13.5
PLTS~189,000

Well, after dealing with low CO2, rapid breathing and very easily winded, we got some answers today. Victor will be 6 months post transplant on Nov 6th! Up to this point, with the exception of a few steps back, and then a few more forward, he is doing good! But then the issue with Victor's CO2 started about 2 weeks ago. The doctor was not overly concerned then, but because this has not resolved yet with added sodium acetate to his IV fluids he gets at night, for two weeks now, some red flags went up on Monday. First of all, Victor's respiratory rate was very high, 42 per minute, his O2 sat was low at 92nd his heart rate was elevated at 130 beats per minute. The doctor listened to his lungs and chest and couldn't hear anything abnormal, but still wanted a chest Xray to make sure that there was not fluid in his lungs and around his heart. The Xray came back fine. So Victor got a breathing treatment at the clinic and was sent home with a nebulizer to use as needed.

The doctor also moved Victor's 6 month evaluations up by two weeks so we could do a comparison from his pre-transplant testing. So Victor has an EKG/ECHO done today as well as a pulmonary function test done, all of which were perfect before the transplant! Well, the results came back pretty shocking! His PFT's were significantly lower, and his ECHO shows that he has mild depression of the left ventricle. This means that he has weakening of the heart muscle. The PFT's are going to be repeated on Tuesday, the doctor feels that this cannot be accurate because the results were so extreme, maybe Victor wasn't trying his best. Also that normally a child at 6 years old wouldn't even get a PFT done under other circumstances because of poor performance (whatever that means). In addition to the PFT, Victor will do a stress test of his lungs.

A MUGA scan is ordered to further review the extent of the damage to the heart muscle. That will be this coming week as well.

We are holding our breath and our hope that the issues at hand are reversable and not long term damage. For now we are trying hard to focus on how Victor is feeling NOW. He is still just the most amazing child in the world! He is still doing PT and he just started OT this week! Both of which he does twice a week. He also fits in three days of home school from 4-6 T-W-TH......He just loves Miss Wilkie his teacher, we do too! We are still going to pottery painting once a week, so far Victor made a Turtle and he has started on a Turkey! It really keeps his mind off of things, and it gives him and I quality time together. Most of our time together is spent traveling back and forth to the clinic and the hours we spend there. And at home, Nicholas is not willing to give me alone time with Victor. So we have a good time painting!

Our light the Night total has soared to $8,804 and still counting! Team Victory did an awesome job this year! I love you all for being a part of something I am very passionate about!

Thats all for tonight, I will promise an update Tuesday after the PFTs

Love and Prayers,
Apryle

Tuesday, October 11, 2005 8:34 PM CDT

Day +154

I am happy to report some good news! Victor is eating, and is feeling great! All of his labs this week were back to normal even his kidney functions have returned to his normal.

Counts for this week are:

WBC~11,800
ANC~6,000
PLTS~131,000
HGB~12.9

Of course when I saw the high white blood count I got worried, but the doctor assured me that all of the cells seen on Victor's blood slide were healthy cells and probably high from the result of his body fighting off some infection or inflamation. Also given the fact that his platelets and red cells continue to produce there is no need for concern at this point. We would like to see the white count back down next week!!!!!

The skin is also starting to get a little bit better, we are really trying to keep up with the washing and the creams, it is making a difference.

PT is doing wonders for Victor's strength. What a huge difference in his movements, they seem more natural than forced. He is up to three days per week now, so add in school and Mr. Victor has a full schedule.

I took Victor last week to do pottery painting. He loved it! This is something that will get him out of the house this winter where there's not many people during the day and keep his mind on something different. He wants to make gifts for family and friends. Nick tried it but after 20 minutes he was ready to go, not for a 3 year old I guess????

Thats all for now, as soon as I get some results from the Light the Night walk I will post them. Thanks to all who helped us raise $8000 (I think that is close to our total, we may even be over that)

Love,
Apryle

Tuesday, October 4, 2005 7:20 AM CDT

Day 146

Yesterday Vic had a check up at the clinic and over all things are improving, with the exception of his eating.

WBC~9000
ANC~4600
PLTS~128,000
HGB~11.8

Again, all of his blood counts are great, and his chemestries are improving as well. His kidney functions have returned to a normal value, and his electrolytes have stabled. Now we need to sort out the eating issues. I had a lengthy conversation with the PA about the smell sensativity and if we could get past that I think Victor would eat more. So we are going to start investagating. First he is going to start back on the appetite stimulant at a higher dose. The thought is that this couldn't have been causing his tummy to be upset because he's been off it now for two weeks and still no changes. So if we give him a larger dose, he may start eating and not be taking all of his meds on an empty stomach. We are also going to speak with an endocrinologist about the possibilities of some gland/hormone damage that is causing Victor to be so ultra sensative to smells. This could be a side effect of the chemo and radiation (not sure, but something we are going to look into.

We are also going to schedule a sooner visit with the dermatologist being that the skin issue is not resolving the way we would all like it to.

We were happy to see that Victor grew 1" since July! He is happy as well now he can ride all of the rides at Kennywood and Disney as he hit the 48" mark!!!!!!

I know without asking that we are in your thoughts and prayers always, we are very grateful for all of you! I need to ask you all again to pray for a few of the families that we have meet over the past two years who are dealing with complete devastation. First for The Schmidt family, this still blows me away, to think that she and Victor were in this together, and she lost the battle, I am crushed for this family. As well as the Pletcher's....... Justess is a tiny little 23 month old child who was transplanted for MDS, a pre curser to AML. This family was one of the families that spent the summer in CHP with us on what became home to many of us "Transplant Row". Justess just had her day 100 bone marrow and the family was informed that her cancer is back and this time it is not just MDS it is leukemia. What a slap in the face. I also found that another teen aged boy, almost adult(20) has passed on, he was on the block with us also. So if you could please add the Schmidt and Pletcher families as well as Jordan's mother and grandmother and all of our friends who are batting with illness, including little Dominic Tarquinio who was dx with CP and is now dealing with issues of fluid around his brain. Please pray for faith, hope, and peace for these families.

Thanks,
Apryle

Friday, September 30, 2005 7:35 PM CDT

Day +143

It seems that in this journey we've been traveling the past few years we encounter good and bad. We have meet many, many families who are enduring the same challanges as we are, some even more severe and devestating. Today is one of deep deep sorrow. It is with a very heavy heart that I ask you all to pray for the Schmidt family as little Clare has passed on this morning. She was just weeks behind Victor in the transplant process. It seems that her lungs were damaged beyond repair. Clare was at Day +73, and had spent the last 40+ days in the PICU, on oxygen, she fought as long as her little body could. Please stop by www.caringbridge.com/md/clareschmidt and leave Karen and Benno some encouraging words.

Victor continues to struggle with his eating. If he could get past the smell of food he would be fine. Other than this issue he is doing good. He is excelling in his school work, as he's in the upper math group and advanced reading. He is also doing great with PT. I notice him moving about more natural now, and bending, using his hips more, this is where he is weakest.

His kidney functions continue to be on the higher side of normal .9, but still within a normal range for a medicated child. He is weaning off of one of his anti-rejection drugs cellcept, and on a lower dose of his main anti drug FK506.

Victor's skin is still the same as well. I think that we need to be more dillegent about applying the face wash and lotion. He hates it! So it is easy to say forget it right now when I am battling him over eating, drinking etc. I try to pick and choose my battles with him.

And of course his blood counts are wonderful;

WBC~9000
ANC~5500
HGB~12
PLTS~125,000

Light the Night is October 5th this year,, with Team Victory raising $7200 so far and funds still trickeling in. If we continue on this path, we could be in the top 5 teams this year (out ot 200+) Not bad guys!!!!!If anyone is interested in joining our team or donating, it is not to late, donations are always welcome.

Thanks again, and remember how fragile life is, hug, kiss and cherish every moment with your kids!

Love,
Apryle

Monday, September 19, 2005 8:42 PM CDT

Day 132 and finally another update!

So so sorry that it's so far in between updates, I'm sure that most of you with families know how hectic life can be! Add to the mix weekly clinic visits, home school, all the trips to the pharmacy, well.....I know you all understand.

I have a lot to tell, some good and some bad. I'll start off with the bad news. I think in my last update I was bragging about how rock solid all of Victor's chemestries were, well last weeks visit proved I'm just getting way too cocky. We got home after feeling really good about blood counts and Victor's overall physicial exam only to find out that Kidney functions were way up as well as one of Victor's main anti rejection drug levels in his blood stream. This was to be the first night in 5 months without IV fluids...... the PA called to inform us that until kidney functions returned to normal Vic would need to remain on fluids at night! Heck, I was sosososososo looking forward to MAYBE sleeping through the night, not having to get up for three to four bathroom trips. She felt that extra hydration would help flush out the kidneys and bring the drug level down in addition to dropping the drug dose by 50 We returned to the clinic again Tuesday for a repeat of labs, and they were still high. For those who know numbers creatinine was 1.1 (normal is between .6 and .9 for a child who is getting many medications). The PA arranged for labs to be drawn again from home on Thursday, these results showed an increase in the creatinine up to 1.3! YIKES.... This time the drug dose was cut by another 25nd acyclivar (the anti viral drug) was stopped until further notice, this is a drug that is know to cause elevations in kidney functions, but also a very critical medication for Victor because his immune system is not functioning normally yet and certain viruses can be seriou if contracted. We were hoping and praying that the numbers dropped...On Sat another nurse came to our home for labs! Around 2pm we were informed that Victor's creatinine was down to .9 which is in the normal range for a highly medicated child, but a tad bit higher than Victor has been running all throughout this process (he has been at .7 forever!!!!!!) No changes were made from the instructions that we were given Thursday and Victor was to be seen at the clinic Monday (which is today). Todays chemestries were about the same as Sat, creat was .9, but the drug level was low, so the dose was increase back up to 50We will have a repeat of blood work on Thursday in hopes that the creat returns to Victor's normal so that the anti viral drug will be re started.

The good news is blood counts (knock on wood) are awesome:

Last weeks counts:
WBC~7,100
ANC~5,000
HGB~12
PLTS~119,000

This weeks count:
WBC~9,000
ANC~5,500
HGB~11.9
PLTS~112,000

NORMAL RANGES ARE:
WBC~5,000 to 12,000
ANC~ greater than 1,000
HGB~greater than 11
PLTS~140,000 to 450,000

So as you can see if Victor's platelets were just a tad bit higher all of his blood counts would be right within the normal ranges! For this we thank God!!!! Many children that we know who have been transplant around the same time as Victor are still getting transfused with blood and platelets. So this is a blessing for us.

I mentioned in my last update that Victor was having some issues with acne, well turns out that after requesting a trip to the dermatologist, Victor has Periol Dermatitis. It is not acne, also not GvHD, but is more than likely a result of the GvHD which has caused Victor's skin to be ultra sensative. Seems that he had some sort of reaction to the mint tooth paste that he's using which triggered a contact reaction around his mouth. From there it spread to his hair line area. He is using a special face wash Plexion wipes (sulfer, his head smells like a match stick) and also was prescribed a medicated cream Elidel. So far no major changes, but it is not spreading or breaking out more. This again is going to be an on going battle to keep his skin normal.

Victor is starting physical therapy this week. We got to meet with his therapist over the weekend, and she seems great! He is very weak, so this is also going to be a very slow process, baby steps at getting his muscles stronger again.

Eating is pretty much out the window! I never thought that I would see the day that Victor didn't want to eat. Since the relapse in Feb, he was on steroids and eating like crazy, now he might eat, and maybe he wants this or that, but still only eats a few bites before pushing it away. We tried an appetite stimulant, but that only seemed to upset his stomach. And smells just set him off into feeling sick in his stomach. This is all new for us because he was never sick during his frontline therapy. He is taking zofran to help with the nausea. His weight is down, but most of it was added from steroids and not his true self.

Over all, this pretty much sucks! Point blank, I've had it, and want my child's life back, my life back. It's so hard to get into the groove of things when you never know what tomorrow will bring. We try to plan things, but never get to follow through with it because of set backs and "bumps" in the road. (I know that what we are experiencing is bumps compared to what so of the other families that we have got to know have gone through! God bless Karen and Benno! visit www.caringbridge.com/md/clareschmidt) But never the less, our life is in limbo, and I can't seem to find my place. Things get very overwhelming with all of the meds, IV's, blood pressures, temps, special face wash twice a day, and so on..... Not to mention sleep deprived and all jacked up during the day on caffine and candy.(no wonder I had two cavities this past dentist trip!)I thought this was going to get easier the further out we got, but it has only got harder. Imagine two years of your families life pulled out from under your feet? When do you get it back? Is it ever going to be normal again? These are things that I want answers to but only time will tell, and I've had it with the waiting game!

So in your prayers tonight if you could just ask God to lift some of the burden off of my shoulders for a while, they are getting a bit weak and I need my strength to last a life time. Thanks friends!

Love,
Apryle

Tuesday, September 6, 2005 9:50 PM CDT

Today is day 119

This is going to be the mother of all updates since it has taking me so long to get with it! So I won't keep you in suspense, things are going pretty good. I have lots to talk about but will start with Victor's medical update first.

Today was a clinic day and things went very well considering Victor was feeling crappy all weekend. He started to run a low grade fever on Sunday night, but it stayed low grade. He was also feeling very tired and has lost his appetite almost completely. I think in my last update I told you all that Victor was going to be done with steroids, well........ He took his last dose on Thursday last week and the rest is history. He is eating nothing, we come to find out that the only reason he was eating at all since the transplant is from the steroids. The fatigue is also related to the missing steroids. His body is so used to being wound up from the long term usage of steroids, to the point which he needed a sleep aid to help him sleep at night, that now he is just wiped out. His body is tired. His muscles are also very week (again from steroids) So to keep him moving and energized, the doctor prescribed an appetite stimulant for Victor. He needs to eat to keep up his strength, to keep excercising, so his muscle's don't turn to mush! He has lost a few pounds but it is only the weight that he has gained from the USE OF STEROIDS!

Victor's skin and nails really took a major hit from the graft verses host disease. His nails basically stopped growing and are now in the process of the old dead nails falling off and the new (should be) healthy nails growing in. Only the new nails are not growing in very healthy looking. The are very rough and ridgade (is that a word???)
We will be keeping a close eye on the growth over the next several weeks being this could be a sign of chronic GvHD. The skin on his face is also a mess, he has acne like a teen boy. The doctor doesn't feel that this is anything more than just acne at this time, again due to STEROIDS, but is another thing that we will keep a very close eye on as this could also be a sign of chronic GvHD developing. If these issues do prove to be GvH related, they are both very managable, but will prevent Victor from being weaned from the anti-rejection drugs just yet! I'll tell ya, this is a very long process, with baby steps to progress, we are still in the beginning phase of recovery. GvH at this point, I guess it would be nice to see a """touch""" of it. Sounds crazy for me to say that after how much of the acute GvH Victor had to deal with, but bare with me. GvH also creates the GvL (graft vesres Leukemia) So if by some chance there is a few residual leukemia cells left, we feel pretty confident that Victor's new, healthy, ready to fight, put up your dukes, this is my body now, stem cells will beat the crap out of it!!!!

I almost forgot counts and chemestries, as usual they are solid:

WBC~6300
ANC~4000
PLTS~90,000
HGB~11.6

Liver and kidney's are functioning very well, considering all that they have endured during the transplant. Drug levels have also been great. And we are hopeful that by next weeks clinic visit Victor will be eating and he will be able to d/c his IV fluids at night! Keep fingers crossed. If this happens he will need to start on oral magnesium, now he is getting a mag supplement in his fluids, and his body is going to continue to need aid replenishing this mineral because the anit drugs can depleat mag from the body.

School started on Friday for Victor, and as usual he didn't skip a beat! He was very happy to see his teacher Miss Wilkie return for the second year of home schooling. He is reading like a champ, and very good at math. I think that he is going to excel when it comes to education, it comes easy for him.

Last week I took Victor and Nicholas for an afternoon golf outing and a trip to the toy store. Of course we were the only ones at the mini golf course being that it was school hours, and toys'r'us was not busy either. So slowly we are going to be able to do more normal things, but with extreme caution!

We are going to be doing our annual fundraising for the LLS Light the Night Walk. One of the events that we have planned for this year is a Jewerly Show on Sept 23rd. 20f our total sales will benefit the LLS. We are also selling luminary's and paper balloons. Anyone interested in helping Team Victory beat our goal of $6000 please contact me!

Thanks again to all of you who have helped us get to this point, we couldn't have made it here without you all!

Love,
Apryle

Thursday, August 25, 2005 8:55 PM CDT

Day +107

It's easy to "forget about the computer" when you are finally home with lots of things to do. In the hospital all I did was look at the screen, look at Victor, log on, look back at Victor and so on. Now I am lucky to get time to even look at the computer, only when one of the kids wants a disk on..... I am not complaining, it is good to be normal. (well, our normal is not everyone's normal, but normal in a different kind of way.)

Medically Victor is doing great! He had a clinic visit on Monday, in and out again. He gets his blood taken out of his broviac line, so no pokes at all. Then the doctor or the assistant gives him a very extensive exam. During that time we wait for the results of his blood work to come back, which usually takes 10 minutes at the most. Victor's counts are holding up great, so there is no need for any transfusions, which is what makes for a long day at the clinic. His counts on Monday were:

WBC~8,800
ANC~6,600
PLTS~80,000
HGB~11.8

We are still waiting for his platelets to take off and for his red blood type to change over to his new donor type which will be O+. We were told that this could take awhile to happen. For now we are just so happy with the results of all of Victor's weekly labs. He is down to 8 hours a night on IV fluids. Through this infusion he gets extra magnesium and potassium, as these two minerals in the body are often effected by the anti-rejection drugs that Victor is on (FK506 and Cellcept). Once the doctor feels that Victor gut will tolerate oral magnesium, Victor will be able to stop fluids all together. He also gets another IV medication at home, it's an anti-fungal drug. Given the fact that Victor has been on steroids for 3+ months, he is very susceptable to getting a fungal infection. He was on such a high dose in the beginning due to the graft verses host disease, but now he is weaned down to just 5mg per day. Next week Victor will start on an oral form of fungal medication, yeah!

Once the steroids are done completely for one week, if Victor continues to do well with no issues with GvHD flare ups, then we will start to wean off the one anti-rejection drug, cellcept. These steps are huge for us! But we're not to anxious to stop the drugs just yet being that Victor's GvH was a stage IV, he is at a great risk for developing chronic GvHD issues, which start to occur after day 100. But for now we cherish the good days that we are having!

Victor is getting stronger everyday! He is moving about more and his legs are regaining some of the strength that he lost due to all of the steroid use. It will be quite some time before he will be back to normal, but he's getting there. He's walking on the treadmill for 20 minutes a day, and doing outdoor activities like hitting baseballs, shooting his bow and arrow and gun with dad, and playing with Nick in the backyard. Now that he can go outside without his mask, he has the desire to be out more.

We go back to the clinic Monday for counts/chemestries and also Victor's IVIG infusion which takes all day!!!! So we will have a long day, but only to prevent a reaction to the antibodies in the IVIG. I will update more then. Thanks for checking in.

Love,
Apryle

Monday, August 15, 2005 6:58 PM CDT

Today is day 97..........

And I must say that things are moving in the right direction for a change! (knocking, trying not to jinx the situation.) To celebrate the good news that we got on Friday of Victor being 100onor cells we took the boys to the drive-in to see Charlie and the Chocolate Factory. It was a nice relaxing evening for all of us! This was our very first family outing since the transplant.

Today was a clinic day and we were very pleased with Victor's counts:

WBC~9,100
ANC~7,000
HGB~11.9
PLTS~85,000

Dr. Goyal also told us that Victor may go into our backyard and front porch without his mask on! This is huge for him because he hates wearing the mask in the heat and it has been in the 90's this past week so he hasn't wanted to go outside at all. When we got home today he sat on the porch and told me "now this is getting fresh air"! Too Cute that Victor!!!!!! He is also able to go to the movies OFF PEAK hours, like a very early viewing. We are going to wait until school starts back just to be on the safe side! And last, Victor is going to start on lactose free milk FINALLY! So baby steps with his diet, but they are better than standing still!

Once the steroids are weened off entirely, we will start to ween off one of the anti-rejection drugs, this will be in another two weeks! We are making tons of progress here!

Thanks for checking in on Victor and remember to leave him a message in his guestbook so he knows who is stopping by!

Love,
Apryle

Friday, August 12, 2005 12:54 AM CDT

Day +94

This just in..............

All of the final results of the 100 day bone marrow tests are in, Victor is 100% donor cells!!!!!!!!

Love, Apryle

Tuesday, August 9, 2005 8:05 PM CDT

Day +91........ But who's counting!

Victor had a clinic visit today! Things were great. All of his blood work is right on track, here's counts today:

WBC~12,000
ANC~10,000
HGB~11.7
PLTS~73,000

All up from when we left the hospital Sat. Also, all of Victor's chemestries are fine with the exception of his magnesium level, it is on the lower side. The anti rejection drugs that Victor takes is known to depleat the body of minerals such as magnesium. Since Victor is off of the IV nutrition, he wil get added mag in his IV fluids at night. This will be much easier on his stomach, as oral mag can cause loose stools, and we don't want to go there again!!!!

The official reports are in from the pathologist and
Victor's bone marrow and spinal fluid are cancer free!!!!!! We are still waiting for the DNA tests to come in, this will indicate what percent donor cells Vic has...... NOTHING BUT 100% EXPECTED AT THIS POINT! We should have these results in by the end of the week.

Nothing really to report on the home front. We really cannot go anywhere at this phase of the process, and we cannot have much company as Victor is still considered very immune suppressed and will remain this way until his anti-rejection drugs start to get weened. We are hoping that with 100 days post transplant in the very near future, and given the fact that the GvH disease is completely under control and has not flared up with the weening off of the steroids (down from 100 mg per day to just 15 mg per day) that Dr. Goyal will ween off the Cellcept, this drug has been very hard to detect in Victor's blood stream, so we're not even all that sure that it is helping. The thought a month or more ago when the GvH was still in the healing process was *If it's not broke, don't fix it* but things are different now...... We will see on Monday when we see Dr. Goyal for the first time since he is back from his vacation........

And now Victor is down to once a week at the clinic, so we are really going to enjoy our time at home while we can!!!!

Thats all for now, thanks for the prayers and support!
Love,
Apryle and Vic

Sunday, August 7, 2005 1:20 PM CDT

Day 89

Well we are finally home, Victor was discharged yesterday morning at 9:30. He is still running low grade fevers, but without any underlying reasons. The doctor told us to put the thermometer in the closet and not to take his temp unless he is acting different than he has been for the last two weeks. So we took his advice. Things went very well at home all day yesterday, until........................

Victor woke up at 5am with a terrible coughing spell, he was upset, crying and couldn't catch his breath. Everytime he took a deep breath he would start to cough. Finally he gagged up a ton of mucus. He stopped coughing and was fine. We still took his to the ER for a chest x-ray and exam. The x-ray was clear, his chest and lungs are fine and all of his vital signs were good, even his temp was closer to normal than it has been. We are thinking that the anti biotic he is on for his sinusitis is finally starting to work, and caused the mucus to break up and collect in his lungs while he was sleeping. Victor is fine this afternoon, he will go back to the clinic Tuesday for a complete check-up.

When we left the hospital his counts were great:

WBC~9000
ANC~6982
PLTS~68,000
HGB~10.9

Victor is also off of the IV nutrition, and he is just getting IV fluids at night now.

I will update again after Tuesdays apt.
Love,
Apryle

Wednesday, August 3, 2005 9:17 PM CDT

Day 85

ALL CLEAR, THE PRELIMINARY RESULTS ARE IN AND VICTOR'S BONE MARROW IS LEUKEMIA FREE AS WELL AS HIS SPINAL FLUID!!!!

As most of you can imagine today was an emotionally exhausting day. It started with the procedures taking place at 8:30 am, and just sitting around all day waiting for the results. We got some answers at 3:30 pm, and were overjoyed to say the least!!!!!!!

We are still not sure why Victor is having these fevers, but tonight I am going to breath in the results of todays tests!!

Thank you all for asking God to hold Victor in his hands and protect him during the procedures today, and providing us with such wonderful news.

I will update more tomorrow!
Love,
Apryle and Vic, Victor and Nick!!!!

Tuesday, August 2, 2005 12:31 AM CDT

Day +85

Things are still right about the same with Victor, he is still having fevers. The good things are:

1. He feels great
2. His fevers are starting to space out more
and are not as high
3. He is still eating very well
4. His spirits are wonderful, despite being stuck
in the hospital again
5. His counts are still very good:

WBC~8,800
ANC~6,248
HGB~10.4
PLTS~52,000

Not much change in them at all, which is a good sign that his marrow is producing, but with the fevers still present we still need to check things out inside his marrow to rule out a relapse. The doctors are still not convinced that the fevers have anything to do with a reaccurence, but to rule out and ease our minds we are going to go ahead with a bone marrow aspiration as well as a biopsy and a diagnostic spinal tap. These are typical tests that are done on day 100 post transplant and being that Victor is at day 85, if all is clear with the results then Vic will not have to endure the 100 day BM tests.

We know that so many of you are lifting Victor up in prayer and we ask that tonight you all pray for good results from tomorrows tests. We should have some preliminary results by late afternoon tomorrow so as soon as I find out I will let you all know.

Thanks again and remember to join us at 9:30 am/pm to pray for Victor as well as all of the other children and their families who have to battle cancer.

Love,
Apryle and Vic

Sunday, July 31, 2005 2:01 PM CDT

Day 82

I know that it has been almost one week since my last update and most of you are wondering what is going on. The truth is we are wondering also what is going on. Victor is still having fevers that just will not subside. Even with tylenol he has not had a normal 98.6 temp in almost one week. The doctors have done various tests on him, and they have ruled out a bacterial infection in his broviac lines as well as his blood and around his heart. They has ruled out a fungal infection in his sinuses as well as his lungs. On Friday Victor had a sinus procedure done to asperiate the fluid build up from his sinus cavitites and the preliminary results do not show any type of infections. The other alternativies are viral. They doctors have done viral studies and cultures, but the results will take up to two weeks to come in. In the meantime, until the fevers go away Victor will remain in the hospital.

I think that I have avoided posting for fear that I might frighten some of you, but the truth is that we are frightened by all of this. As parents of a child with cancer fevers can be very scarey, not only for fear of infection but for fear of relapse. We finally realized that avoiding the subject is not going to make a relapse go away. If this is what we are facing, then we need to come to terms with the possibility now and not have it thrown in our laps when the doctors start to show concern that something is going on with Victor's bone marrow. At this point they are not concerned about a relapse. We have had many conversations with them reguarding our fears of the worst and they do not feel that this is the case at this point. Victor is feeling better than he has in the longest time, with no other symptoms of ANYTHING other than the fever. If things would decline then the doc's would consider doing a BMA to see if something more is going on, but not at this point. Victor's counts continue to be solid:

WBC~8600
ANC~7260
PLTS~58,000
HGB~10.2

All without any transfusions in well over a month!!!!! This is also a bonus!

For now we are asking all of you to join us in prayer at 9:30 AM and PM to pray that this is not a relapse and just a stubborn fever.... Thanks and I will update with any new info as soon as we get answers.

Love,
Apryle

Monday, July 25, 2005 1:26 PM CDT

Day 76

Well, after battling with low grade fevers all weekend, Victor is now inpatient with what is considered a *true* fever 101. All weekend long Victor's temp was around 99.5-100.6 We were in contact with the doctors and they advised us to bring Victor into the clinic Monday morning for labs and cultures. So here we are.

All of Victor's blood work is great:

WBC~7500
ANC~5600
PLTS~48,000
HGB~11.6

Now we will have to wait to see if there is any bacterial infections brewing. We are also going to have a CT scan done tomorrow morning as well as an EKG to make sure that there is no bacteria around the heart. These are both just precautions, anytime you have a central line that is directed to the heart, special care and concern needs to be taken to prevent any serious complications from occuring.

Victor is feeling great. He is eating well, what his tummy is able to tolerate, and we are hoping that once we get back home to be able to introduce him to different foods.

This *should just be a short admission*, but we will have to wait for test results before we know for sure how long Victor will be inpatient. I hope not too long, I have tickets to the Kenny Chesney concert Sat July 30th and wouldn't want to miss it! But we will have to see.....

So that is all for now, I will update as soon as we get some of the results back.

Love,
Apryle

Monday, July 18, 2005 4:00 PM CDT

Day 69

Things are going really good for a change! The transition home has been a sweet one, and we are all adjusting well. It is so nice to sleep in our our beds, drink our own coffee, and all be together as a family again. I must tell you all it's the little things in life that make a big difference! So take a quick moment everyday and reflect on how lucky you are to have a happy, healthy family and cherish it for a lifetime.....

Victor is doing great. He had his first outpatient clinic visit on Friday. His counts were all good and he did not need any transfusions. All of his blood chemestries were within ideal ranges, and his liver and kidney functions are "happy" as well.

Victor also had a second clinic visit today, and counts are still rocking:

WBC~8,000
ANC~5,600
PLTS~39,000
HGB~11.6

When we were discharged from the hospital we were told that Victor would need to be seen three times per week, but because his counts are so stable we only have to go twice, so he will go back on Thursday,

At home Victor is still requiring IV nutrition. His body took a huge hit from the GvHD and his Gut is still healing. We hang the IV at night for 12 hours. In addition, on Monday, Wed, and Friday we give Vic an IV anti-fungal drug that infuses for two hours. Learning how to use the pumps for the medications was very overwhelming at first, but I think that I got it now! Victor is also taking a ton of pills, check this list out:

Acycloviar~(anti-viral) twice a day
Pepcid~twice a day
Prednisone~35MG a day
Actigall~(helps flush out the liver) twice a day
FK506 (anti-rejection drug) 2 mg twice a day
Cellcept (also anti-rejection) 750mg twice a day
Benedryl (a sleep aid) before bed
Imodium (helps with the loose BM's) in the am

Some of the doses require Victor to take two and even three pills making his total amount of pills to swallow 11 in the morning and 11 at night. He does such a great job taking them, no problems in this department at all!!!!!

Again, thanks to all of our family and friend for the support that you have given us over the past two years, especially these past two months, we are forever grateful!

Love,
Apryle

Thursday, July 14, 2005 10:56 AM CDT

Day +65

Today's entry is going to be a little different for me. I'm going to skip talking about medications, poop, tummy pains, and anything that has to do with cancer. Today I am going to talk about feelings, mine in particular.......

Celine Dion says it all in a song that she wrote for the birth of her son. This song describes the way I feel about the "Re-Birth" of my son......

A New Day Has Come~

I was waiting for so long
For a miracle to come
Everyone told me to be strong
Hold on and don't shed a tear

So through the darkness and good times
I knew I'd make it through
And the world throught I had it all
But I was waiting for you

Hush now
I see the light in the sky
It's almost blinding me
I can't believe I've been touched by an angel
With love

Let the rain come down
And wash away my tears
Let it fill my soul
And drown my tears
Let it shatter the walls
For a new sun

A NEW DAY HAS COME

Where it was dark now there's light
Where there was pain now there's joy
Where there was weakness, I found my strength
All in the eye's of a BOY

Hush now
I see the light in the sky
It's almost blinding me
I can't believe I've been touched by an angel
With love

Let the rain come down
And wash away my tears
Let it fill my soul
And drown my tears
Let it shatter the walls
For a new sun

A NEW DAY HAS COME!

Thanks for checking in today!
Love,
Apryle

Wednesday, July 13, 2005 10:24 PM CDT

Day 64

10 week and 2 days and we are finally home!!!!! I am exhausted, home care was here all evening showing us the tricks of the trade, we had to get all of the meds filled. And just getting unpacked and settled in has us all tuckered out.

We are so happy to be home and all together again, what more can I say.......

We left the hospital today with great counts:

WBC~9,900
ANC~9025
PLTS~35,000
HGB~9.9

Victor will have his first outpatient clinic visit on Friday at 9:30am. He is getting IV fluids at night for 12 hours here at home and he is also on one other IV med at home, everything else is oral or given at the clinic.

Tommorrow is a day of rest for all of us..... I will update more tomorrow moring, I have a lot to say, but my brain is not functioning right now. Until then, It's a good night!

Love,
The Flinkos

Monday, July 11, 2005 11:08 AM CDT

Day + 62

It's offical~ We are out of here on Wed!!!!!!!! We are all thrilled to say the least........ Lots of prayers needed that things stay stable so the plans don't change!

Counts for the day are great:

WBC~9,900
ANC~8811
PLTS~46,000
HGB~9.5

All we need now is the many prescriptions and instructions for home and we will be on our merry way! Everything else is going good. So that's all for now, I don't want to jinx it! So long.

Love,
Apryle

Friday, July 8, 2005 8:40 AM CDT

Day 59

Todays counts are great!

WBC~9000
ANC~8100
PLTS~57,000
HGB~9.6

All wonderful...... And so is everything else. Victor's stomach is healing and he is eating all of the foods that he is able to digest. His diet consists of very bland foods such as plain chicken, mashed potatoes, rice, pretzles, toast, noodles without sauce. He is also not to have any simple carbs (fresh fruits, can fruits, juices, no sweets at all for now) and no dairy as he is lactose intolerant. Once he mends a bit more we will be able to slowely introduce these things into his diet, but for now he's quite content just having the tube feeding out and being able to chew.

His activity level is much better. He is still walking those laps around the unit. For those of you who have never been on 8 north ( and I hope that you never need a reason to be) you can circle the unit, like you are walking a track, it is great excersise for him.

Victor's blood pressure has been great, in fact he is off of Norvasc (bp med) for almost two weeks now. Probably because he is weening down on steroids and also switched to FK506 (anti-rejection drug). We were told that FK has fewer side effects than the original anti-drug he was on, but not all together ruled out!

Today we got the OK to take Victor OUTSIDE!!!! We are going to the CHP Plasa, it is just a small quaint area that has pretty flowers planted by children here in Pittsburgh. This is going to be his first breath of fresh air in 67 days!!!!!! He's excited and so are we. This means that we are one step close to hearing those words.....shhhhhhhhhhhhhhhhh, I won't say it now!

Remember how important it is to donate blood and help save lives, it has saved Victor's life and many of the other children that are spending their summer in Children's Hospital. You can call 1-800-DONORS1 to schedule an apt at you local blood bank, also ask about being a platelet donor, there are weight restrictions to both. Once we get on our feet, we will be participating in local drives and getting all of our family and friend involved, but for now donations are needed!

And again thanks to all of our great friends and wonderful family. Also the wonderful staff of 8 north (ESPECIALLY YOU LAUREN!)

Love,
Apryle and Vic

Wednesday, July 6, 2005 11:33 AM CDT

Day + 57

Todays counts:

WBC~15,000
ANC~12,245
PLTS~71,000 ( and that is not transfused!)
HGB~10.4

These are all great, the white count is on the high side, but most likely due to the steroids that Vic is on. We'll take it at this point!

Well Victor's tummy is doing much better. He did have a bout of loose stooling last night, but the doctor as well as the dietician are in agreement that it is due to the foods that he's eating. His biopsy did show that he was low on some of the ezymes that help your bowel digest carbs and refined sugars, so he is going to need to avoid these types of foods all together, until things start to settle better for him.

I don't want to jinx us but I think that discharge came up in the conversation over the past couple of days. I'm not sure when but I am starting to see the light!!!!!

All of Victor''s blood chemestries and liver enzymes are within excepable ranges and we are very happy about that because the tummy issues really knocked his body out of whack for a while.

Now we want to express our most sincere thanks to all of our friends and family who have helped us get through this. I wish that I could tell you all how much the support has ment to us, but I don't think that words could ever express out gratitude. The financial support had been amazing. The emotional support has kept us sane!!!! (well at least me, I'm not sure about Vic (lol)) The spiritual support has helped us to realize what is most important in our life and also helped us regain our faith in God! I couldn't begin to name each of you, this list is very, very long, I think that you all know who you are, we will never forget the amazing strength that you have shown us! Thank you all millions.

For those of you who want to help in someway, we ask that you donate blood and platelets whenever possible, this is the most valuable gift that you could give. And also we ask for everyone to consider being a bone marrow donor or if you are pregnant please donate your baby's cord blood!

Thanks friends,
Apryle and Vic

Sunday, July 3, 2005 8:27 PM CDT

Day + 54

Today was a much, much better day!!!! We were not expecting to see the GI doctor on a Sunday, especially the Fourth of July weekend, but she came around. I am so very happy to report that the feeding tube is OUT!!!!!!!!!! Victor is a totally different child. No tummy cramps today, no nausea or vomiting, no morphine for pain! What a difference one tube can make. The only restriction now is he's still not able to eat anything solid. He's starting out on Neocate Juice Packs and if he is tolerating that well than tomorrow morning he will be able to start with clear liquids. We had a great day. Victor actually walked around the unit and went to the playroom. We painted a ceiling tile that will be hung up in the playroom, Victor is excited that he's going to leave his "mark".

We were also very happy with his counts for the day:

WBC~6000
ANC~4080
PLTS~32,000
HGB~10.7

This is a list of normal blood counts:

WBC~5,000-11,000
ANC~>1500
HGB~>11
Platelets~>150,000

Victor's white count and ANC are a lot higher than yesterday's count. His platelets also went up, he is holding his own...... He still has a way to go with platelets, until they are within a normal range, but for the most his are doing great, only needing transfused every two weeks or so!

I think that we are all going to get a goodnights rest tonight!

Thanks for checking in and Happy Fourth!

Love,
Apryle, Vic, Victor and Nicholas

Saturday, July 2, 2005 10:54 AM CDT

Day +53

OK, so no one ever said that this was going to be easy, but we never imagined it to be this frustrating. It's almost like being stuck in the middle, Victor is not yet ready to be discharged, but on the other hand he hasn't been a canidate for the ICU, not even close(knocking, hard, very hard!!!)

Victor's counts are good:

WBC~2900
ANC~1716
PLTS~23,000
HGB~12.7

He's still not requiring many transfusions of platelets, and only had two red blood cell since we have been here, OH which is 2 months today! The drop in his white blood count is more than likely the result of Cellcept, one of the immune suppressant drugs he is on. Two days ago the doctor decide to increase the dose because the range was not at a theraputic level. This is one of those drugs that is very hard to monitor.

The feeding tube remains that "big" issue for now. It is almost one week since they GI doctor put it in. The loose stools have subsided but he is still having tummy cramps throughout the day. He is miserable with the tube. No smiles, not talking, no nothing. This has been the most invasive thing that Victor has been through over the past two years (for him at least) It's crazy, he would take a leg shot or a spinal tap with a grain of salt, but this has him so upset. Now that he is up to total feedings, the doctor's will re-evaluate him Tuesday and decide whether or not the tube can come out. Please pray that his Gut has healed enough so our baby will smile again!!!

Today is the first day that Victor is asking for something to eat. We havn't talked with the GI doctor yet, but I am going to see if they will allow him to have Jello or Applesauce.

I hope you all have a great Fourth!
Love,
Apryle and Vic

Tuesday, June 28, 2005 10:01 PM CDT

Day +49

Finally some news that we wanted to hear! The biopsy results are in and very encouraging. Even though the scans of the stomach and the colon looked normal, they did have, at some point some GvH envolvement, but the good news is that they have healed! The small bowel which was the area of the scans that you could see the damage is also in the healing stages and this is justified by the fact that pathology could not identify any active GvH. Usually they are able to look at the biopsy and grade it as they did with the skin, but they couldn't even say that it was a grade I. No we are not happy that he has had GvHD in his Gut but we are thrilled that it is not showing resistance to the immune suppressant drugs that he is on! The bad news is that the feeding tube has to stay in until the small bowel heals more. Eating would just irratate it more and not allow it to heal fast. I think that we are on the right path now......

Counts for today are good:

WBC~5700
ANC~3648
HGB~11.1
PLTS~81,000

We are happy that all of Victor's counts have gone up which proves that his bone marrow is producing on it's own.

Victor is not a happy camper! In fact I don't think that I have ever seen him this withdrawl. He will not talk, not two words! When we ask him what he is so angry about he points to the tube in his nose. He gags when he swallows or tries to speak, so I think that is the main reason he won't talk. Child life is trying to work with him in different ways. She brought in a bag of things for Victor to express his anger on, a ball to squeeze and other items as well. We are hoping that she can make some progress with him..

We are also consulting with the physical therapists here at CHP. Because of all of the high dose steroids Vic is on his muscles are showing signs of weakness. She will come around one a day and do various activities with him to get him motivated to move, Lord knows that we are the bad guys when we make him walk the halls!!!!!!


Last week I asked all of our faithful friends and family to pray for the other children and families who are battling cancer, one young man in particular who was mis-diagnosed. It is with a heavy heart that I tell you all that he has passed away on June 25th. Please keep his family in your prayers as they had to say their final goodbye to him today!

As always please keep Victor in your thoughts and prayers as he battles his way to cure!

Thanks,
Apryle and Vic

Monday, June 27, 2005 4:31 PM CDT

Day 48

I thought that by day 48 I would be updating from home, but we have yet to see the light at the end of that tunnel.

A lot is going on right now, first of all Victor's counts have been good:

WBC~4200
ANC~3150
PLTS~66,000
HGB~9.6

Victor did get his first red blood transfusion since May 27th. The doctor feels that the anti-rejection drugs can eat up your red blood cells, and so we are not at all alarmed by this.

Last week Victor had a CT scan done because he was having a lot of congestion, well it is showing that he does have Sinusitis. The doctor reviewed the scan as well as the senior radiologist and they are both in agreement that this is nothing too impressive. The reason I say this is because when you take a patient who is immune suppressed, fungal infections can brew with the only symptoms being a low grade presisting fever. The sinus cavity is one of the most common places of fungal infections in post tranplant patients. Victor is just showing a bunch of "junky fluid" nothing infectious. We praise God for that!!!!

He is still running low grade fevers, but his blood cultures remain negative, which leads me to the next phase of this long, draining, transplant process:::::

Because Victor is still experiencing terrible stomach cramping and loose stools, along with fever, the doctor had the GI team come up to talk with us. We can clinically look at Victor's case and say that he has GvHD in his Gut, but if we treat it as GvHD and it proves to be something else, such as CMV virus, things could take a nasty turn for the worse. CMV (cytomegolvirus) is a very common infection after transplant, it affects about 30 percent of patients. The reason this needs to be ruled out is CMV can be a very serious virus when it is in the intestines, and because Victor did test positve for the CMV virus before the transplant he has a greater chance of developing it. Do the doctor's really think that this is CMV???? NO, but the need was there to rule it out. So today we agreed along with the transplant team and the GI doctor's that a Colonoscopy and Esophagogastroduodenoscopy exam be done so that we can all better treat Victor's symptoms. This involved scoping from his rectum as well as his esophagus and taking images of areas in concern. They also did a biospy of the stomach, colon and small bowel. From the scans we can see the damage in the small bowel. The lining is slothed off and inflamed. This is the main area of concern. His stomach, colon and large bowel are all normal looking. He did have slight inflamation of the esophagus. We should have the results of the biospies later tomorrow and will know for sure if the damage is viral or GvHD. We are asking everyone to pray that which ever this proves to be, God gives the doctor's the knowledge to treat and resolve Victor's pain.

With so much irratation to the small bowel, the GI doctor's consulted with Victor's BMT doc and were both in agreement that the only way to allow the bowel to heal is to put a feeding tube in through his nose. This will also allow Victor to get the nutrients that his body is lacking. He is not liking the tube at all. He isn't going to be able to eat now for at least one week. This is the best way to help his body heal......

Please continue to pray that Victor wins this battle and we are able to get home and be a normal family soon......

Thanks,
Apryle and Vic

Wednesday, June 22, 2005 10:38 AM CDT

Day +43

Things seem to be on the up! It's one of those wait and see kind of situations though...... The rash is doing wonderful, almost gone. The loose stools continue to be an issue, one day it's not quite as much as others, and the next day he has the urge to go more often. The good thing is that the total volume is not overwhelming.

The blood culture is now negative, so Victor will finish out the course of anti-biotics which is about 10 days or so.

Counts for the past two days are good:

6/22
WBC~5300
ANC~4452
PLTS~42,000
HGB~7.7

6/21
WBC~6400
ANC~5888
PLTS~14,000
HGB~8.9

Victor got platelets yesterday as they were under 20,000. Today his red blood cells are low, tomorrow he may need transfused, this will be the first since May 27th.....

Victor's blood chemestries are starting to improve with the TPN, and over all he is feeling better. He wants to eat and does to an extent, but he cramps up when anything hits his tummy. We are going to try Imodium today to give him more relief so he can eat.....

Liver enzymes are good, a few are slightly elevated, the doctor thinks it could be from TPN, but they are keeping a few close eye on them.

51 days in the hospital, this is really starting to wear on all of us, we want to go home! Please send up extra prayers that things continue on an upward trend and we can get home soon.......

Thanks for checking in on us
Love,
Apryle and Vic

Sunday, June 19, 2005 8:56 PM CDT

Day + 40

So sorry that I haven't posted in a few days, I decided that I needed to take a break from the computer for a while. Seems like every time I got on here I found some article or journal that freaked me out in one way or another. Rest assured that we are doing fine though....

I have a lot to update. First off, Victor is doing much better. The rash is fading daily, the regression that the doctor wanted to see. He is still battling with GvHD in his gut. It is not severe but enough to make him uncomfortable and in the bathroom a few times a day. Once this area starts to resolve it won't be long before we get the OK to go home, but we aren't rushing it.

Victor's counts are holding up great considering all of the anti-rejection drugs he is on. FK506, Cellcept and Zenopax. We have noticed a drop in the past few days, but nothing extreme.

WBC~4000
ANC~3360
HGB~8.8
PLTS~36,000

Victor did get a platelet transfusion yesterday, the first one in 9 days. Cellcept can cause your red blood counts to drop, so we are anticipating that he will need red cells soon.

The sleeping is starting to give way as well. His energy levels are up and he is only napping once a day now. He also wants to eat which is a good sign. He will continue on the IV nutrition until some of his normal proteins and minerals return to normal.

The only other thing is Victor got a fever 2 night ago, and the blood culture grew out a positive bacteria. So now he is going to be on IV anti-biotics for at least 10 days.

Thanks for all of the prayers and support!
Love,
Apryle and Vic

Thursday, June 16, 2005 10:22 PM CDT

Day +37

Day by day, that is the way we have to function. Yesterday we noticed that the rash was a lot lighter, today it flared back up again. Victor is also having terrible stomach pains and loose stools. Although yesterday the doctor was not convinced that it was GvHD, I think that we all have an idea that it is today. We really need your prayers that thinks start to improve soon. The doctor things that things are stable, not progressing but not the regression that he would like to see.

Victor did perk up more today than he has in the past week. He also ate more than he has been. The IV nutrition will continue to run during the night just to replenish his body of the normal minerals and proteins that he is not in taking alone.

Counts for the day are good:

WBC~4200
ANC~2820
PLTS~36,000
HGB~9.8

These counts are great considering he just had a transplant. He hasn't needed a platelet transfusion for 7 days, and red blood since May 17th. The doctor's tell us that it is normal for kids to need transfusions for a while post transplant. So we are not out of the woods yet!

Thanks for the support,
Apryle and Vic

Wednesday, June 15, 2005 4:12 PM CDT

Day +36

Yesterday Victor started the FK506, we woke up pleasantly surprised! His face, neck and chest has really lightened up. He still has a way to go but we are making progress. He is still having belly pains and loose stools but very infrequent. But overall things are starting to look better. The doctor is still not convinced that the gut issues are related to GvHD, but again this is something that we will need to watch closely.

Because his eating is very minimual the doctor has decide to run a partial IV nutrition at night. Victor's protein and calcium levels have been on the low side and this should held to increase them.

Today Victor's counts have dropped:

WBC~3200
ANC~2720
PLTS~28,000
HGB~9.8

We are almost certain that the decrease in blood counts is due to the one drug (immunosuppressant) Cellcept used to fight off the GvHD.

I would like to thanks all of our friends and family who participated in the 3rd Annual Golf Outing on Victor's behalf. We cannot express our sincere gratitude for all of the support our family has been given during these trying times.

Love,
Apryle and Vic

Monday, June 13, 2005 8:24 PM CDT

Day +34

Counts for the day:

WBC~5600
ANC~4592
PLTS~45,000
HGB~11.1

Still great. We are very thankful for that.

Today the doctor decide to switch things up in hopes of a quicker recovery. Victor is going to stop the anti-rejection drug cyclosporin and start on another form FK506. There is a slight improvement in the rash, but not much. The good thing is that it is not spreading anymore and is just isolated to his upper torso. Some spots are starting to fade and others that got very very dark, almost to a purplish color, have developed fluid filled blisters. Not a pretty sight. The derm recommended using aquophor cream to keep the skin from drying and causing more blisters.

He is still tired but was up more today than the past couple of days. He is still having loose stools, but they are not out of control, maybe once or twice a day. The nurses tell us that if he had GvH of the gut than the color and volume would be different than what he is experiencing now. We ask you all to pray very hard tomnight that he doesn't develop GvHD in his Gut! WE are very hopeful that this is just a side effect of the Cellcept which has a high incidence of gastro irratation.

Tomorrow is a new day hopefully with good news!!!!!

Thanks for checking in as always, the prays, encouraging words and support mean the world to us!

Love,
Apryle and Vic

Saturday, June 11, 2005 1:58 PM CDT

Day +32

Where to start? First the rash is no better so the doctor's decided to add a third drug to the mix. It is called Cellcept. It is going to act by killing the new very active cells so they will stop treating Victor's skin cells as a forgein body within. Again, with the combination of this and Zenopax we are expecting to see improvement but it could take a few weeks to really start to work. Which means that we will be here for another few weeks or so. The Cellcept can cause immunosuppression, so we will need to be very cautious (as usual) that Victor stay healthy. He could be on this drug for a while if it proves to be the resolution.

We also talked with a dermatologist in regaurds to the skin cells being damaged by the GvHD. There are a few options out there to help heal the skin. One of the recommened treatments is PUVA it involves the use of ultraviolet lights. Not sure exactlly what it does, but it is a healing therapy. With the extent of Victor's GvHD right now, the derm doesn't want to try this yet. Once the rash starts to lighten up from the drugs then we could possibly move forward with PUVA.

One more concerning issue started yesterday. Victor had terrible cramping in his stomach and then loose stools followed. The doctor did a stool culture to see if he has a very common intestional bacteria, c-diff. Victor had c-diff a few times before while on high dose chemotherapy. The cause is from the use of high dose anti-biotics. Once all of the "bad" bacteria in the body is killed off by the anti-biotics, c-diff which is a "good" bacteria that resides in the intestions becomes active and can cause severe cramping and loose BM's. Of course we are worried that the GvHD has moved on to his Gut, so please pray that the bowel problems are just c-diff and not GvH. We should know by tomorrow what the diagnosis is.

And as always counts are AWESOME:

WBC~22,000
ANC~19,000
HGB~12.6
PLTS~66,000

The white blood count is high. The normal range is 5,000-10,000. We just about freaked out when we seen his white count today. The reason for this being so high is the high dose of steroids he is on. He is getting 100 mg a day and steroids cause an increase in wbc's. The doctor's say that his blood is looking healthy! And not to worry about the increase because they are all mature cells that are seen.

Blood chemestries are all within normal ranges. Victor's sugar is still on the higher side, but not extreme.

Blood pressures are being controlled by Norvasc and Procardia as needed. He takes the Norvasc twice a day and the procardia inbetween if his pressures creep up during the day. He has not need procardia since he started on the Norvasc.

The blood pressure and the sugar are both temporary and should go down once the high dose steroids are weened.

Victor is still very very tired. He sleeps a good 80% of the day. We are trying to keep him eating when he is up, so far he will. He is just not himself right now. This is the worst that he's been since the relapse. We are a wreck seeing him like this. It is just not him, that is hard to stomach. We keep in mind that this was not going to be the easy way out and that he has been through so much these past few months (heck, years)! I know that the light at the end of the tunnel is near, and then we can get on with our life!!!!!!!

Please continue to keep Victor in you prayers as he battles GvHD~
Love,
Apryle and Vic

Thursday, June 9, 2005 8:44 PM CDT

Day +30

Today the rash SEEMS to be a little bit better. Victor got his second dose of Zenopax today so we will see if it made a difference by morning......

Counts are great:

WBC~9600
ANC~7720
PLTS~20,000
HGB~11.6

Victor did get a platelet transfusion this morning, that was the first one in 6 days. His hemoglobin is almost in the normal range.

All of his blood chemestries are good, even his sugar today. Last night the doctor discontinued the sugar from Victor's IV fluids, and his level went down from 147 to 120.

Victor's liver enzymes continue to be SOLID! Awesome sign.

All we need is the rash to show more improvement and I think we could get the OK to go home. I am really starting to miss my house, my own bed, and our own normal life!!!!!!!! Victor never complains about being here, he is one tough cookie!

He continues to be tired and we are pretty sure that it is from the radiation. If not that, what about the fact that he just had a transplant and his entire body is healing, of course he is going to be tired.

The unit we are on can be very hard to swallow somedays! Today was one of those days for me. The are kids here with cancer from infant to 22..... All differenet kind of cancers, tumors, blood cancers, even a 2 year old who has bladder cancer! There are families dealing with relapse and newly diagnosed families. One young man in particular is having a very hard time. When he was 18 months old he had a kidney transplant. 18 years later he was diagnosed with cancer AML a more aggressive form of leukemia. The doctors have to be very diligent with his chemotherapy being that a lot of drugs are toxic to your kidneys, and he only has one functioning kidney. He has been battling for remission now for four months and his family just found out yesterday that he was mis-diagnosed. He has Non-hodgkins lymphoma which requires a more aggressive protocol. He is very sick! Please say extra prayers for this young man and his family as they battle to save his life......

And as always please continue to pray for Victor's healing!
Thank you all,
Apryle and Vic

Wednesday, June 8, 2005 9:49 PM CDT

Day +29

The results of the bone marrow biospy are back and it is official, Victor is 100% female!!!!!! Just kidding, but he is 100% donor cells which are from one awesome baby girl's mother who was kind enough to donate her baby's cord blood to save a life. I wish that we would have the chance to thank the family, but we will never get the to meet them. When you get bone marrow from an adult donor, one year after the transplant the bone marrow donor program will provide the donor information to the receipient.......

Victor's counts are still rocking:

WBC~6600
ANC~5610
HGB~10.8
PLTS~26,000

We were pleasantly surprised with the slight rise in all of his blood counts this morning. This proves that he is starting to produce on his own. It wouldn't be uncommon if his counts float around for a few months before they really take off!

All of Victor's liver enzymes are within the normal range. This is a good sign when the doctor's are looking for toxicities associated with drugs as well as GvHD. So far no issues in this department.

One thing that is starting to increase with the high dose of steroids is Victor's blood sugar. He has been running on the higher side of normal and today he was even higher at 147. Now we have to watch his sugar intake, for those who know Victor and his eating habits, he is not a sweets kind of kid. But no juice, sweetened cereals, cookies, etc. If the level doesn't decrease then he will need to take insulin while he is on steroids, and because the diabetes is caused by the drugs once they are stopped or even weened to a lower dose, his blood sugar should decrease as well.

The rash is still the same. He will get the second dose of Zenopax tomorrow. So we are hoping that is going to make the difference.

Thanks again for the prayers and support,
Apryle and Vic

Tuesday, June 7, 2005 10:15 PM CDT

Day +28

Tonight I am going to start this off a bit different. First with the good thing about the day: The rash didn't get worse and counts are great!

WBC~5300
ANC~4420
HGB~10.4
PLTS~24,000

Victor hasn't needed any transfusions since June 3rd. That was a platelet transfusion. He will probably need one tomorrow morning being that is count is 24,000 and normal low is 150,000. He hasn't got packed red cells since May 17th. We are very plaease with the way his numbers are coming in.

Now the bad thing about the day, the rash didn't get any better! We woke up this moring with hopes that we would see some lightening in the color of his skin, but we didn't! Hopefully this drug just takes time to work!!!! Prayers that tomorrow we will see a change for the better.

Victor continues to be very tired. He is sleeping a lot. His primary onc came in to see him yesterday and said that he thought Victor was suffering from "sleep solomenance" a side effect from cranial radiation that usually happens right about 6-8 weeks post radiation. Victor is 6 weeks past CR starting yesterday! This can last for several days to a week. Low grade fevers are also seen about this time, and the timing is right!

All of Victor's blood chemestries are within normal ranges and his liver enzymes are holding considering most of the drugs that Vic is on are filtered through the liver.

Victor is still taking high blod pressure medication, but his pressures have been on the low side of "high". The main reason he is on this is due to the increase in his cyclosporin and steroids. The doctor's anticicpate high blood pressure with such high dose of these two meds.

Thanks for checking in, I will update more tomorrow.
Apryle

Monday, June 6, 2005 7:26 PM CDT

Day +27

Well, over the weekend the rash has progressed. The doctors had anticipated the steroids to clear the rash and it got worse. They added a new drug today called Zenapax. It is an immune suppressant used to interfere with antibodies on the surface of the new stem cells. We are hopefull that this is going to help.....

Victor's counts are great. Now that he is off neupogen he is holding his own.

WBC~5300
ANC~4000
PLTS~28,000
HGB~10.8

All of his liver enzymes and blod chemestries are within the normal ranges. He is doing fine except for the skin GvHD. And really GvHD can be a lot worse than this.

Now that his cyclosporin was increased, his level is higher 331 so the doc's feel that he has more protection from this as well.

So we are here for 5 weeks as of today. We are not sure when we will be getting out of here, but no hurry, as long as things are under control here then we are fine with CHP.

So tonight I ask for extra prayers that the rash clears up with this new drug!!!!!!!

Thanks,
Apryle and Vic

Saturday, June 4, 2005 8:36 PM CDT

Day +25

We have our first set back in this journey. Victor's skin GvHD is terrible. He is covered in a rash like you cannot imagine. It is itchey and very uncomfortable. He is on 100 mg of steroids a day. His cyclosporin level was 223 (anti-rejection med~ideal range betwee 200~300) so the doctor increased his dose to get it up closer to the 300 mark. He is getting an anti itch pill, Periaction as well as Benedryl and he is still miserable! That is putting it mild! The meds for the itch do nothing but make him sleep. When he is up he is not himself. The doctor is going it give the steroids until Monday and then make some changes accordingly. Pray that this starts to give some!

Victor started to run a temp on Friday during his IVIG infusion so the doctor ordered a blood culture to be done, but no anti-biotics because he felt that the fever was due to the IVIG. Well yesterday the culture came back positive for bacteria. He was cultured again yesterday and then started on anti-biotics. The culture came back negative today! Odd because he didn't start the anti-biotics until AFTER he was cultured! The doc said that it is possible that this was not a true positive and possibly a contamination. We will see what the next couple of days brings, but he is not running fevers at all!

Counts for June 3rd:

WBC~11,1000
ANC~10,000
Plts~19,000
HGB~10.4

Because his white blood count was over 10,000 his dose of neupogen was discontinued. Neupogen is a drug used the stimulate the growth of the white blood cells.

Counts for today June 4th:

WBC~6800
ANC~5440
PLTS~40,000
HGB~10.2

So now that Victor is off of neupogen his white blood count has dropped off some, which is totally normal. It may even drop some more, but his numbers are still great!

All of his liver enzymes are within the normal ranges and his blood chemestries are good.

I will update again tomorrow!
Apryle

Thursday, June 2, 2005 8:22 PM CDT

Day + 23

Today was another good day for Victor. Mostly boring, but good. He got his IVIG infusion today, this is the antibody that he had an adverse reaction to the first two times that he got it. This time around he did great with it. The nurse pre-medicated him with benedryl and tylenol and then she ran the infusion for 6 hours. Victor slept most of the time.

His counts are still ROCKING!

WBC~10,000
ANC~9400
PLTS~40,000
HGB~10.4

No transfusion's today! All of Victor's blood chemestries and liver enzymes are with in the normal range. His potassium has stablized now that the AmBisome has been switched to every other day. That is the anti-fungal drug that can cause your kidney's to leak potassium out.

His blood pressure was good for the most part today. It did go up high once or twice, but receeded without medication. And of course he is still eating! That never stopped. The doctor is starting to ween off Victor's IV fluids and he wants Victor to be drinking between 40 and 60 oz of liquid per day. Geez, I don't even drink that much! But Vic is a trooper and he is not complaining at all about us forcing the liquids.

Now on to the good news! The preliminary results of Victor's BMB look EXCELLENT! The doctor told us that his new marrow looks very celluar! We will get the final reading Monday (maybe) we are all anticipating good results...

The skin biopsy is positive for GvHD. Victor's rash is graded a 3, which is pretty high. The treatment for his GvH is going to be 100mg of steroids a day. This is not going to be a good mix! VIC and ROIDS.....UGLY...... But we will manange like we manange everything else. If it wasn't for the GvH, Victor would be on his way out the door of CHP. Now we will have to wait for the rash to subside some and make sure that all of Vic's vitals are stable before discharge. No big deal! This is where he needs to be at a time like this. So the plan if 4 days of high dose steroids and then see where the rash takes us!

Well that's all for now! I'll update again tomorrow,
Love,
Apryle and Vic

Wednesday, June 1, 2005 6:12 PM CDT

Day +22

Today was a big day for Victor. He went to surgery at 11:35, had a bone marrow aspiration and biopsy, a skin biospy and he had one of his broviac lines removed! All went very well. Now we just wait for the results of the biospy's and aspiration..... Maybe tomorrow on the skin and prelim results of the bma.

Victor's counts continue to rock!!!!

WBC~9600
ANC~7296
PLTS~64,000
HGB~10.6

This morning he did get a platelet transfusion because he was going to have surgery, but other than that he is doing great!

The rash is still there but not getting worse, that is a good sign. The biospy will tell the doctor's what grade Victor's GvHD is, and then we will treat from there.

Victor's cyclosporin level was low yesterday, it was 170, and an ideal range is between 200 and 300, so his does of cyclo was increased.

His blood pressure was normal all day, but with the increase in the cyclosporin and the anticipated increase in steroids comes higher blood pressure so the talk of putting him on a med to control his pressure is getting more serious. That is something that we will see once we get the results of the skin Biospy.

Victor went to the playroom after his surgery today! He was running the halls, it was amazing to see this child run, heck he just had a transplant!!!!!!! Where does he get the energy, I sure don't have enough to keep up with him.

He is still eating, but it has got harder to find things for him since he will be on this strict neutropenic diet. He is not allow to eat any fresh veggies, that is his favorite!

Thanks again,
Apryle and Vic

Tuesday, May 31, 2005 2:46 PM CDT

Day +21

Victor continues to do very well. We have encountered a few minor "bumps" in the road though.

Counts for the day:

WBC~8100
ANC~6885
HGB~10.9
PLTS~29,0000

First, the GvHD rash is still hanging around. The doctor is going to do the skin biopsy tomorrow to diagnose it. They can look at the rash and say that it is GvHD but they need the medical dx to treat it. And the treatment for a GvHD rash is higher doses of steroids...... Not fun! Remember I said that it is good to have some degree of graft verses host because it allows for graft verses leukemia. The doctor said that Victor's GvH looks to be on the mild side, they have seen children that looked totally purple all over from the rash, Victor is more of a reddish shade and only isolated to his face and neck, a touch here and there, but not covered. The skin biopsy will help the doctor determine the grade of Victor's GvH. The risk of severe GvH in Cord blood transplants is less than in an unrelated bone marrow transplant. This dx would be very normal for where Victor is in the transplant process.

Second, I think that I spoke too soon when I said that his blood pressure was holding. Over the past couple of days his BP has gone up to where he needed a blood pressure medication. It is called Procardia. He will take it as needed for now. He only got it once yesterday and so far not at all today..... (me knocking on wood) It can be given every four hours if the BP continues to be high. If his pressures continue to rise then he may be given a BP med on a regular basis, but for now he is still holding his own! The rise in the BP is due to the anti-rejection drug cyclosporin and also the steroids that he has been on. This is a very common, and managable side effect for a transplant patient.

Third, Victor was in need of a potassium infusion this morning. His level was quite low when the blood chemestries were done. The drop in the potassium is due to the anti-fungal drug that he has been on. AmBisome can interact with the kidney functions and therefore cause some of your bodily minreals to jump around. The doctor ordered the AmBisome to be infused every other day instead of every day. The nurse is going to do a repeat potassium level at 5 pm today to see if the infusion helped. This is also something that is anticipated in a transplant patient. Once you start pumping a body full of drugs, things are bound to go wacky for sometime until all of the glitches are worked out!

Tomorrow Victor will get his one of his broviac lines removed, a bone marrow asperation and the skin biopsy done. Usually a BMA is done on day 28 but because Victor's counts are rebounding so nice he is able to have his BMA done on day 22!!!! Please send up extra prayers tonight that the surgery goes well and that the BMA looks as good as *NEW*....

Thanks to all,
Apryle and Vic

Sunday, May 29, 2005 9:37 PM CDT

Day +19

Well after 27 nights in the hospital, I decided to spend one night at home! I am typing this from the comfort of my own house. But am I really settled? Heck No! I am a wreck inside, wondering how things are going at CHP. Vic is with Victor so I KNOW that things are taken care of, but still I can't help but wonder?????? Nicholas is so so so happy to be home with his mommy! I am so so happy to be with him!

Victor's counts for the day are:

WBC~4800
ANC~3620
PLTS~24,000
HGB~7.9

I think that the answer to our question "why is he so tired" is that his hemoglobin was low!!!! He got packed red blood cells this afternoon and he perked up quick!!!!! He will probably need platelets tomorrow! AGAIN! And remember this is totally normal. It will be quite a while before his bone marrow starts to produce platlets and red cells.

And really that is all for the day. The weekends are not very informative at CHP. Oh, the rash is still around, but no worse that the previous days. I think that the doctor is going to want to biopsy an area of his skin to diagnosis it as graft verses host. That we will find out this week from the main transplant doctor!

Thanks again!
Vic and Apryle

Saturday, May 28, 2005 11:47 AM CDT

Day 18

I didn't get the chance to update last night, but like they say, no news is good news!!!!!

Victor continues to do well. His counts are still on the rise:

WBC~4900
ANC~3920
PLTS~19,000
HGB~8.6

He will need platelets again today. The trend seems to be every other day, which is common. He has not needed packed red blood in a while.

Victor is showing signs of a GvH rash. It is on is neck and face. It is not bothersome to him at all. The doctor's tell us that it is good to have some degree of graft verses host disaese, it also creates the graft verses leukemia affect, where the new cells combat any remaining leukemia cells that are lingering around. We hope that there are none of Victor's old cells floating around, but if there are then that is where the GvL comes into play!!!

Yesterday the doctor told us that Vcitor will get one of his broviac lines removed on Wed. He has also switched Victor over to some oral medications. He is on limited IV's and fluid! He is sailing on out of here with flying colors.

All of his blood chemestries are within the normal ranges as well as his cyclosporin level.

He has managed to maintain his blood pressure also. It is very common for a patient on cyclosporin to have high blood pressure and need medication, so far Victor has been fine. The highest he has been is 128/90's, which is on the high side, but it never goes up over that, in fact it tends to go right back down when his next set of vitals are taken.

One thing that we are starting to see is that Victor is tired a lot. 1 pm and he is napping. I know that this is normal for a child who has just had a bone marrow transplant, but not normal Victor, at least up until now. He is five weeks past cranial radiation which is right around the time that the side effects of CR start to happen! Sleep syndrome!!!!

Well that is it for now~~
I hope you all hve a wonderful Memorial Day!
Love and Prayers,
Apryle

Friday, May 27, 2005 12:38 AM CDT

Day +17

This just in!!!!!!! Victor is 100% donor cells!!!!!! Counts are great!!!!

WBC~3500
ANC~2765
PLTS~45,000
HGB~8.6

I will udate later, just wanted to share the great news!!!!!

Love,
Apryle

Thursday, May 26, 2005 8:35 PM CDT

Day 16

Another great day! Victor is doing awesome. He went to the playroom again. The fevers are starting to fade, as well as the rash. He is off of one of the anti-biotics. He is taking his anti-viral med in a form pill without a problem. All of his blood chemestries are within the normal range and his cyclosporin level is ideal (anti-rejection drug). His IV fluids have been reduced. These are all good signs!!!!!

Counts for the day are:

WBC~3000
ANC~2400
HGB~9.0
PLTS~16,000

He did get another platelet transfusion. But this is expected. It could be several months before his platelets recover alone.

He is eating and active, nothing has changed!

We are awaiting the results of the FISH test. This is like a DNA test to see who's blood cells are floating around in Victor's body. We are hoping to get the results tomorrow, if not by Monday.

Again, I want to thank all of our family and friends for the prayers and support! We could not have done this alone.

Love and Prayers,
Apryle and Victor

Wednesday, May 25, 2005 3:30 PM CDT

Day +15

Things are going very, very well today!!!!!! We got the results back from the CT scan and it is all clear of any infections. So the fevers are thought to be from engraftment of the new stem cells.

Victor is doing wonderful. Today he got to go back to the playroom for private play time. He was so happy to get out again. He has been writing "transplant mail" letters with one of his neighbors (who is 22!) and he finally got to see her today. He went to her room and peeked in, she was so happy to him as well. She is about one week behind Victor and not feeling too good right now, lets all say some extra prayers for Cassidy!

Todays counts are:

WBC~2500
ANC~1525
PLTS~25,000
HGB~8.9

Today's counts were not much different than yesterday's. The doctor thinks that the reason is the reduction of steroids. They help bump up your white blood count, and Victor's dose was just reduced. No big deal!!!!! He is still producing on his own.

All of his liver enzymes and blood chemestries are within the normal range. He is just skating through this. (knocking) The doctor said that he is doing amazing for day 15....... They didn't expect to see engraftment until now or even a few days from now, so he is ahead of the game.

We are all doing good!!!!! Keep all of those prayers coming!!!!!!!!!

Love,
Apryle and Vic

Tuesday, May 24, 2005 8:25 PM CDT

Day +14

Let just say that Victor's new stem cells have engrafted. Today was three days in a row that his ANC was over 500.

WBC~2600
ANC~1222
HGB~10.1
PLTS~19,000

He did get a platelet transfusion, but his hgb managed to go up on it's own. We are hoping that the trend moves to his platelets soon.

One thing that the doctor showed some concern about today was the lingering fevers and rash. He switched Victor's anti-fungal medication to a broader spectrum drug, Ambisome. Although fever and rash are assoicated with engraftment, the source COULD also be from something else. When you have a patient who is immume suppressed, precautions NEED to be taken to prevent any type of infection from spinning out of control. Victor also got a CT scan done this afternoon to see if there is any evidence of an underlying infection that has not been detected. And these are all PRECAUTIONS!!!! We should know the results of the CT in the morning. Pray that all is clear. I know that it will be.

Today Victor got to go to the playroom for the first time in 22 days, this was the first trip outside of his room!!!! He had fun playing with the child life specialist. He can go each day now for an hour! He is already looking forward to tomorrows visit. Another activity that he really looks forward to is the music therapist's visit, they sing, play guitar and dance together.

One thing that is irratating Victor is his eyes. He has lost all of his eyelashes, so his eyes are burning and he is just rubbing them like crazy. Soon they should start to grow back.! (I hope)

The doctor also decide to ween Victor's dose of steroids down to 40 mg a day from 50 mg.

All of his blood chemestries are in the ideal range, as well as his liver enzymes......

Thanks for all of the well wishes and please continue to pray for more good news as we travel down this long winding road to cure!!!!!

Love,
Apryle and Vic

Monday, May 23, 2005 11:35 AM CDT

Day +13

The talk around here is ENGRAFTMENT, that's right, because Victor has had such a strong rise in his white blood count and ANC, the doctor tells us that he HAS engrafted..... Counts for the day are:

wbc~1900
anc~1197
hgb~9.5
plts~29,000

Now that he has had an ANC above 500 for two days, tomorrow he will be able to go the the playroom for private playtime, and he will get to walk around the unit...

All of his liver and kidney functions are within the normal ranges, and his cyclosporin levels are ideal. There is no reason for concern right now.

The rash and fevers are still lingering, but have decreased.

This week the doctor is going to do some extensive blood work on Victor to determine what percent of donor cells he has. He is not anticipating anything but donor cells, but this is still something that has to be checked.

And really, that is it!!!!!! Victor is feeling good and doing just wonderful. He is happy for the most part and still has his fun loving attitude.

He is still eating, I guess that is never going to stop now that he is on steroids again. Depending on the amount of GvHD (graft verses host disease) Victor gets will determine if he will get weened off of steroids or if the dose will be increased. Being that he had such a good HLA match and CB typically has less GvH assoicated recovery than bone marrow, he should probably have a mild case, but again this is something that we will have to wait and see...... Remember, this is just the beginning. We have had a great start and now we just need to stay on this path to complete recovery for the next several months to a year.

Please sign Victor's guestbook so that we know who is stopping by to visit. Thanks again for the prayers and support!!!!!!!

Lots of Love,
Apryle and Vic

Sunday, May 22, 2005 11:56 AM CDT

Day +12

ANC is on the rise. This morning Victor's anc is up to 676!!!!! Yep, that is not a typo, it is 676. Here are the rest of his counts:

wbc~1300
anc~676
plts~15,000
hgb~9.8

He is doing great, the mouths sores are gone and his throat is healing well. The fevers have seemed to subside for now. His rash is clearing all except for his face. And really that is all. Once his anc is above 500 for three days in a row he can leave his room and go to the play room for private playtime!!!! He can also walk the halls when there is not alot of traffic.

He really is doing good! I believe in the power of prayer!

Love, Apryle

Saturday, May 21, 2005 7:57 AM CDT

Day +11~~~~~~Morning Update~~~~~~~Wonderful news~~~~~~

Victor's white blood count is up to 700 and he has an ANC (absolute neutrophil count) 260. This is huge. Once his ANC is 500 for three days in a row he will be considered officially engrafted!!!!! We are THRILLED to put it mild.

I will update more later this evening, but for now I just wanted to share the good news ASAP.....

The prayers are working, keep them coming,
Love,
Apryle

Friday, May 20, 2005 7:13 PM CDT

Day +10

Victor continues to have fever and a terrible rash that just about covers over his entire body. Today it is itchy. The doctor tells us that he is doing WONDERFUL.... the BMT team here at CHP say that this is early for Cord blood to engraft, but a good early.

Still eating!!!!!!!His mouth sores are almost gone, his throat is still a little sore, but not as bad as it has been. He only had morphine twice today!

Here are counts for today:

wbc~200
anc~0
plts~16,000
hgb~9.6

Victor got another platelet transfusion today. This is typical of a transplant patient. He may continue to need blood and platelet transfusions for quite some time after this.... His wbc are still the same, Dr Tersak told us that the cells are doing their job, helping to heal the parts of his body that have been affected by the radiation and chemo. That is why his mouth is healing so quickly. So his wbc may not hike up until the cells do some more work at getting Vic a little more healthy.

I can tell you that the mood aroung here is great. The optimistic attitude is in the air!!!!! We are doing great, all of us!

Victor's blood chemestries are all is the normal ranges, which is a great sign that his liver and kidneys have tolerated the high dose of chemo and radiation that he withstood pre-transplant. We continue to pray that things continue down this path.

I hope everyone has a great weekend!
Love,
Apryle

Thursday, May 19, 2005 9:24 PM CDT

Day +9

Great news~ Victor has a white blood count!!!!!! At nine days post-transplant, this is a very good early sign of engraftment. The fevers, rashes and rise in the wbc all coincide with pre-engraftment. We are hopeful that the count will continue to rise, but it would not be out of the ordinary if it was back down tomorrow. (Praying it goes up, up and up)

Despite the fever and rash he is still eating!!!!! He is still active and happy for the most part. His face is beet red! Other than that the body rash is mild.

His counts are still low

wbc~200 (yes)
anc~0
plts~34,000
hgb~10.2

All of his blood chemestries are still in the normal range. And that is about it for today!!!!!

Keep praying for white blood cells!!!!!
Love,
Apryle and Vic

Thursday, May 19, 2005 9:58 AM CDT

Yesterday's Update~ Day +8

Day +8

Fevers and rashes, that is the topic of the day. Victor has had a temp off and on most of the day. He also has bright red cheeks and a rash that is starting to spread. The sores that are in his mouth are starting to look better, but the ones in his throat are very painful. They are well managed with morphine. All of these symptoms are typical for where he is in the transplant phase. These are the signs of pre-engraftment (or engraftment syndrome). Most kids experience the same things around this time.

His blood counts are:

wbc~<100
anc~0
plts~16,000
hgb~10.7

He did get a platelet transfusion today. All of his blood chemestries are normal and his cyclosporin level is in the ideal range.

I think we are on the right track, but we will have to wait to know for sure until we see some rise in the white blood count and anc.......

Victor is still eating, not as much because it is hard for him to swallow, but the important thig is that he eats some, and he is. His activity was down a bit today because of the fevers, but he did manage to laugh and smile through it!

I will update again tomorrow.
Thanks,
Apryle and Vic
------------------------------------------------------------------

Good News today!!!!!!!! Day +9

We got Victor's counts in for this morning and great news!!! His white blood count is 200...... the doctors have examined the blood slide and it appears that his new cells have found their way into the empty cavities of the bone and made their new home! These are very early signs that he is on his way to engraftment!!!!!! He has all of the classic symptoms, fever with a negative blood culture, rash that is spreading, but not itchy, and the rise in the white blood count! WE are thrilled! And for the most part Victor is feeling great, he is up playing his video game right now!!!!!!!! I will give a full update on today this evening!

Love and prayers,
Apryle

Tuesday, May 17, 2005 8:47 PM CDT

Day +7

One week ago today Victor got his new stem cells, a second chance for a healthy life. Today we wait for the cells to grow!!!!!! GROW, GROW, GROW! Waiting is the hard part, there is no given time as to when the cells will engraft, it could be one week from today, two weeks, or even three weeks. So we wait anxiously for a white blood cell count.

Last night Victor started to run a fever, not terribly high, but enough for the nurse to start anti-biotics and culture his blood. She also hooked him up to the pulse ox machine and his oxygen level was down to 92%. He was on blow-by oxygen for the night. He didn't have tylenol. The temp went up and down throughout the night.

This morning when he got up he still had the low grade fever, but his oxygen was back to normal. The doctor ordered a chest x-ray first thing in the am to make sure that he was not getting fluid build up in his lungs, or pneumonia. The x-ray did show that he had some fluid, so he was started on lasix to help rid his lungs of the extra fluid. All the while Victor is just his normal little happy self! Still eating, still laughing and smiling, still playing!!!!!! All good signs that this is not an infection brewing and just MAYBE something going on with the new cells because he did have a small white count!!!

wbc~100
anc~0
plts~27,000
hgb~8.6

Victor did get a red blood transfusion today, just to give him a boost, he may need platelets tomorrow. The white cells COULD be something trying to grow, but we will have to wait and see what tomorrow brings. Yes it would be totally normal for tomorrows wbc to be 0 again.

At this point we are very happy with Victor's progress. He is still eating which is huge! He is not on a PCA pump, which is huge. He has enegry! That is huge as well! But again, day by day is our motto around here!!!!!!

I will update again tomorrow!
Love,
Apryle and Vic

Monday, May 16, 2005 8:21 PM CDT

Day +6

Today has been just the same as the past couple of days for Victor. The mouth sores are still there, but tolerable with morphine as needed. He is still eating, today he ate pancakes for breakfast. He slept through lunch. And when he got up he was hungry. He ate a whole can of chicken noodle soup, half of a ham snadwich and applesause. Now he is munching on popcorn. As kibg as he keeps eating he will not need TPN (IV nutrition) So far, so good!

All of his blood chemestries are with in the normal ranges. He has needed to have his potassium switched around a few times, his is running on the high side. His fluids now only contain only 3% potassium. His cyclosporin level (the anti-rejection drug) is great now, right in the middle of where it should be 260.

It is now 9:30 pm and Victor is running a low grade temp. The nurse is going to come in and check him at 10 Pm. If it goes up he will be started on IV anti-biotics and his blood will be cultured. Every one tells us that this is a common time for fever to happen in transplant patients.

I will update again tomorrow!
Love, Apryle

Sunday, May 15, 2005 6:25 PM CDT

Day +5

What more can I say?????? Things are going very smooth. Victor is still battling mouth sores, but they are managed with morphine. He has only required a dose of morphine twice today, once at 9:30 am, when he woke up, and once at 5:30 pm right before dinner.

He is still full of energy, getting up out of bed and walking laps. His room is pretty big, so he walks back and forth from the window to the door at least 10 times.

His counts are still down:

wbc~<100
anc~0
plts~27,000
hgb~9.8

The white count is back down from yesterday's 200, which is good. He has not needed a red blood transfusion in almost one week. And his platelets only dropped 3,000.
All of his blood chemestries are within the normal ranges. And the cyclosporin level is back within the ideal range at 251.

And really that is it!!!!! But this is a good thing, the less that I report, the less that is going on here, the better he is doing!

See you all tomorrow!
Love,
Apryle and Vic

Saturday, May 14, 2005 8:01 PM CDT

Day +4

Things are going very well for where Victor is at in the transplant phase. The mucositis is there, but not that bad. I'm not trying to down play it because it can be very painful, but he is tolerating it fine. The doctor's say that if he can still eat with it than that is a good sign. He is still eating. Again, his energy is still hanging around and his spirits are high when he is not complaining of mouth sores. From the tissue slothing off in his throat, he is coughing a bit, and that is when he really complains that his throat hurts. But he is doing his mouth care like a champ.

His counts are still low

wbc~200
anc~0
plts~30,000
hgb~9.6

The white count is at 200, but that doesn't mean that his new cells are growing yet, it is way to early. They are probably just white cells lingering in the perpherial blood that will eventually die off. So tomorrow his white count could be back down to <100 and that would be normal.

Today I went home and got Nicholas and he came for a visit to the hospital. He was so happy to see Victor and daddy! He stayed for a good while and played video games with his big brother. It was like we were a family again, all together.

So for now, we are just chugging along, right on track. All of Victor's chemestries are within normal ranges, so he is giving the doctor's nothing to be concerned about at this point. But we always keep in mind that this was not meant to be a walk in the park and every good day that we have is a BONUS......

Thanks to all of our All-Kids friends who have sent cards and gifts for Victor and Nicholas. Thanks to all of our "old" friends for the unconditional support in everyway! Thanks to all who helped with the Monte Carlo Night to raise funds for our family!!!!! From the bottom of our hearts!

We will give another update tomorrow, hopefully another good day!
Love,
Apryle and Vic

Friday, May 13, 2005 8:15 PM CDT

Day +3

Today Victor woke up with mucositis, this is one of the most common side effects of transplant patients. It is like having ulcers all through your digestive track. Victor only has signs in his throat, and one in his mouth. The doctor gave him morphine at 8 am and within no time at all he is back to himself. Most patients will not eat while they have the sores, but not Victor. He ate breakfast, lunch and dinner. He did need another dose of morphine at 6:30 pm because the pain started again. As soon as he got the meds he was fine.

His counts for the day are:

wbc~<100
anc~0
plts~20,000
hgb~10.2

He got a platelet transfusion today, but his hgb has been holding steady for the past few days......

Victor is A+, but we found out that once his new cells come in he will be 0+.

Victor walked back and forth in his room for 10 minutes today, he has lots of energy. We play all day!!!!!! I am exhausted! He's not!

And that just about sums up the day here at CHP.......
Have a good weekend and I will update again tomorrow.

Love,
Apryle and Vic

Thursday, May 12, 2005 8:02 PM CDT

Day +2

Victor had another amazing day. He woke up feeling wonderful, ate his breakfast and played around in his room. He gets out of his bed and dances to Elvis and to his rap music, it is so funny!

His counts are right where the doctor wants them to be:

wbc~<100
anc~0
plts~30,000
hgb~10.2

He is taking an anti-rejection drug, cyclosprin round the clock. It is infused into his IV. They will monitor his levels every couple of days. The ideal range for it is between 200-300. Today Victor's level came back high at 388, so he was taken off of it for a few hours and then restarted at a lower dose. They also added magnesium to his IV fluids and lowered his potassium. They check all of his blood, enzyme chemestries every day.

This evening started off a bit different. Victor did not want to eat his dinner and complained a bit that his mouth hurt. He is starting to get mouth sores, this is a very common side effect of high dose chemo and radiation. He did his mouth wash before bed and the doctor put in a order for morphine if he wakes up in pain. We hope that the sores stay at a minimun and that the morphine will help. For now he is sleeping comfortably.

Please keep Victor in your prayers as he is going to have some good and bad days ahead, we hope for mostly good....

Love,

Apryle and Vic

Wednesday, May 11, 2005 6:39 PM CDT

Day +1

Victor is doing amazingly well! He is still eating good and has tons of energy! He is basically his normal self.

We are taking this one day at a time because how he is feelling right now can be totally different with each passing moment. So we are just enjoying every good day he has from here on in!

His counts are down

wbc~<100
plts~13,000 (got transfused today)
hgb~10.6
anc~0

This is exactally what the doctor's want to see! So he is on his way.......

Love, Apryle and Victor

Tuesday, May 10, 2005 11:36 AM CDT

DAY 0~ UNRELATED UMBICIAL CORD BLOOD TRANSPLANT DAY!

Well at 10:35 am Victor got his new stem cells, he is on his way to being cured for good this time. The transplant went very well! And quick might I add! He is sleeping right now from the benedryl, but other than that I am very happy to report that he is doing wonderful!

May this be Victor's RE-Birth!
Thank all of you from the bottom of our hearts for the prayer and support,
Apryle and Vic

Monday, May 9, 2005 11:00 PM CDT

Day -1

Today was very uneventful. I am happy to report that Victor is feeling great. He got his last chemo yesterday and he is getting his last dose of the antibody right now. We are glad that he did not have any major issues with the ATG, it is known to cause allergic type of reactions. Victor had some low grade fevers and one *red cheek*, but that is it. Today he just hung out with dad while I went home with Nicholas.

Tomorrow is transplant day, a day that we have been very anxious about for the past 2 months. The new cells will be infused into Victor's body at around 10 am. For everyone who is checking in on Victor, we are asking for your prayers that his Cord Blood transplant is a success with the least amount of side effects to his body.

The entire team tells us that the day will be very anti-climatic, and that Vic will possibly sleep most of the day because of some of the medicines that he is going to be treated with. He should be feeling good for the next few days, and then once all of the cells die off in his body he will start to suffer with nausea, vomiting and terrible mouth and digestive sores.

Tomorrow is a huge day for us, our baby is going to get another chance for a happy healthy life. We will try to update as soon as we have news to report.

Thanks friends,
Apryle and Vic

Sunday, May 8, 2005 8:37 PM CDT

Day -2

Today was a good day! Victor woke this moring ready for the world. He got his last dose of chemo hopefully for ever. He also get ATG once this morning and he is getting his fourth dose right now. He did very good today as far as tolerating the chemo, but he is feeling pretty yucky right now. His temp is up and his tummy feels sick. The nurse is sure that the fever is from ATG, but again she cultured his blood to be safe.

His blood cells are slowing dying off:

wbc~1600
anc~1600
plts~71,000
hgb~8.4

We were worried today because his white count went up a couple of hundred, but the doctor told us that he is surely on the way down by the look of the specific cells that are in his peripheral blood. He has no lymphocytes or monocytes, but all neutrophils and they are the very last of the white cells to die. So by Tuesday he should be down.

And that is about it for today, we are just anxious for the transplant to take place so we can began a new normal.

Thanks friends for the prayers and support!
Apryle and Vic
Thought for the day: Never be discouraged

There is really nothing we need know or even try to understand if we refuse to be discouraged and trust God's guiding hand.....
So take heart and meet each minute with faith in God's great love, aware that every day of is controlled by God above......
And never dread tomorrow or what the future brings, just pray for strength and courage and trust God in all things....
And never grow discouraged be patient and just wait for "God never comes to early and he never comes too late!"

Sunday, May 8, 2005 8:37 PM CDT

Day -2

Today was a good day! Victor woke this moring ready for the world. He got his last dose of chemo hopefully for ever. He also get ATG once this morning and he is getting his fourth dose right now. He did very good today as far as tolerating the chemo, but he is feeling pretty yucky right now. His temp is up and he tummy felt sick. The nurse is sure that the fever is from ATG, but again she cultured his blood to be safe.

His blood cells are slowing dying off:

wbc~1600
anc~1600
plts~71,000
hgb~8.4

We were worried today because his white count went up a couple of hundred, but the doctor told us that he is surely on the way down by the look of the specific cells that are in his prephial blood. He has no lymphocytes or monocytes, but all neutrophils and they are the very last of the white cells to die. So by Tuesday he should be down.

And that is about it for today, we are just anxious for the transplant to take place so we can began a new normal.

Thanks friends for the prayers and support!
Apryle and Vic
Thought for the day: Never be discouraged

There is really nothing we need know or even try to understand if we refuse to be discouraged and trust God's guiding hand.....
So take heart and meet each minute with faith in God's great love, aware that every day of is controlled by God above......
And never dread tomorrow or what the future brings, just pray for strength and courage and trust God in all things....
And never grow discouraged be patient and just wait for "God never comes to early and he never comes too late!"

Saturday, May 7, 2005 8:42 PM CDT

Day -3

Thought for the day: Never be discouraged

There is really nothing we need know or even try to understand if we refuse to be discouraged and trust God's guiding hand.....
So take heart and meet each minute with faith in God's great love, aware that every day of is controlled by God above......
And never dread tomorrow or what the future brings, just pray for strength and courage and trust God in all things....
And never grow discouraged be patient and just wait for "God never comes to early and he never comes too late!"

I got this pocket cross form a good friend of mine, and I find it to hold very true during this time of uncertainty.


Well talk about night and day! This morning Victor woke up feeling wonderful! He got a bath, ate, and was dancing around the room to Elvis. This evening he is sleeping and is just feeling crummy! He got his first dose of High dose chemo this morning, so we know the culprit for the mood change. He is getting a continuious infusion of anti-nausea drugs, but that was not helping so the nurse added another. That is still not enough, so she called the doctor and they are now going to up his dose of zofran by 50%. That should help.

The chemo that he is getting is very toxic, it can cause bladder irratation, so he is getting two things to help prevent damage. One is a drug called Mesna, and the other is lasix, which causes him to urinate alot. But this will help his body flush the cytoxan out faster, kind of like "get in and do the job and get the heck out of my body....."

He is also getting something called ATG that is a antibody derived from a horse and is used to help the body except the new cells as well. Victor got one infusion today and he is going to get another one at 11 pm. So far he did pretty good with it. It is know to cause an allergic type of reaction, but he didn't have any adverse reactions to it yet. Well, we thought he didn't and then just about one hour ago he got a fever, so now he is back on IV anti-biotics and blood cultures are done just as a precaution. The docs are pretty sure that this fever is from the ATG, but better safe than sorry!

He also is getting a continuious dose of an anti-rejection drug, cyclosporin, this is going to help his body to accept the new stem cells. The good thing about all of the meds that he is getting right now is that they are given through the IV, so we don't have to worry that he is not getting the right amount of these drugs that all play a very important rule in the transplant process working!
Tomorrow Victor will get his last dose of cytoxan and also 2 more ATG infusions. We should see a drastic fall in his counts soon, but for now he is doing fine:

wbc~1400
anc~1400
plts~107,000
hgb~7.8

His hemoblobin is low so he will probably get a red blood transfusion tomorrow. Remember to donate blood.....

That is all for now, prayers for an uneventful night, no reactions to the ATG. Victor will require lots of rest as his body is accepting all of this drugs....

Love,Apryle and Vic

Friday, May 6, 2005 6:20 PM CDT

Day -4

Thought for the day: Never be discouraged

There is really nothing we need know or even try to understand if we refuse to be discouraged and trust God's guiding hand.....
So take heart and meet each minute with faith in God's great love, aware that every day of is controlled by God above......
And never dread tomorrow or what the future brings, just pray for strength and courage and trust God in all things....
And never grow discouraged be patient and just wait for "God never comes to early and he never comes too late!"

I got this pocket cross form a good friend of mine, and I find it to hold very true during this time of uncertainty.

Victor update now.........
He is doing just wonderful. His radiation is finished, the girls at Presby gave him a certificate of Merit which he just loved, and they also gave him a new art set for doing such a good job for them.... We are relieved that this phase of the transplant is now in the past. We will worry about long term effect when we get there.

He got his IVIG infusion today. The nurse stayed in the room with us for the first full hour to make sure that he was not going to react to it. She gave him tylenol and benedryl and also a dose of steroids. She also let the infusion run for 7 1/2 hours, she called it the marathon infusion, but it was much better for Victor's body to except the antibodies this way. She would then check his vital signs every 1/2 to make sure that he was not reacting, He did fine this time. He didn't get a fever and all of his other vital signs remained good. He did sleep for the first two hours because of the benedryl, that gave us some quite time so to speak!!!

The 48 hour blood cultures are negative and Victor has been fever free. Yeah!!!!

And that just about sums up today. Tomorrow will start chemo and ATG which is another antibody (derived from horses) that is used to help Victor's body except the new stem cells. The doctor pretty much assured us that Victor will have some sotr of reaction to this, chills, fever etc, but all common and managable. We can deal with managable! But still keep Victor in your prayers so that the chemo/ATG goes smooth.

Thanks again and Hugs to all,
Apryle and Vic

Thursday, May 5, 2005 5:35 PM CDT

Day -5

I am happy to report that Victor's 24 hour blood cultures are negative for a bacterial infection. He will remain on IV antibiotic's until the 48 hour culture. If it is still negative then the antibiotic will be stopped. this is a good thing that he doesn't have an infection brewing, but also makes us wonder why he had the temp and the low blood pressure. The doctor feels that the blood pressure could be his normal pressure while he is sleeping. There is really no reason to beleive that he has a virus, he doesn't have any symptoms of anything going on.

Radiation is almost over, he has one more fraction tomorrow morning and that is it!!!!! Surprisingly he did very well with the treatments, he has not had any nausea or vomiting. And is feel good overall! He is just amazing.

Today things have been very uneventful, sort of boring. Well gram and pap came to visit and mimi and pappy are on there way in to see Vic. Also Pastor Hyrnyak stopped by to see Victor. So it was good that he got a few visitors.

His counts are still pretty good:

wbc~1200
anc~924
hgb~8.9
plts~130,000

They have dropped since his admission Monday, but he is not considered in isolation until Day 0 or his anc is under 500, which ever comes first.

I went home this morning after radiation to see Nick. We went outside to ride his motorcycle. I hated to leave him, it is hard to be away from home!!!!

Thanks for checking in and I will post again tomorrow.
Love,
Apryle

Wednesday, May 4, 2005 6:31 PM CDT

Day -6

Well last night was a bit scary. The fever went down, but so did Victor's blood pressure. The thought is that he may have a bacterial infection going on, but we will not be sure of that until we get the 24 hour report on the blood cultures that were done last night.

We had to keep checking Victor's BP every 15 minutes, and then once they got into a normal range (but still on the lower side) every 1/2 hour. The nurse ran IV fluids and that helped to stablize the BP. He was fever free until later this afternoon, but the important thing is that he is feeling and acting and looking great!

He is a card, he has the nurses and doctors cracking up continusilly. This morning when we got back from radiation, he put on his *bling bling* (which is his rap star neckless) and was dancing around his room to *Baby got Back* all of the nurses had to come and watch the show. It was so funny. Then he called out to his nurse later on in the afternoon and was pretending to be the pizza man, they were laughing so hard..... He is really keeping the tone here at CHP high!!!!!! What a trooper he is.

Tomorrow will be his third day of tbi, and then he will have one treatment on Friday morning. After that session, the doctor would like to try to give him the IVIG infusion that he had the adverse reaction to on Monday night. Dr. Goyal talked to immunology and they feel that the reaction that Victor had is not an allergic reaction, more so a normal adverse reaction that can be controlled by adding steroids to the pre- medication and also running the infusion very slowly. So we will do that Friday early afternoon.

I will post more tomorrow!
Love, Apryle

Tuesday, May 3, 2005 10:03 PM CDT

Day -7

Today was the first day of total body radiation, and lets just say it started off with a bang. At 7:45 we were woke up to the nurse telling us that Victor had his first session of radiation at 8:00....... We thought that he was going to his first session in the afternoon..... So we had to get right out of bed and head over to Presby for the treatment. We found out the the radiation nurse at Presby forgot to call CHP and let them know that they scheduled Victor for a morning session as well as the afternoon.

The treatment was very long. I guess that Victor needed to be very still and he was very fidgety, but lets remember that he is only 6, he got woke out of a sound sleep, and he didn't get to have his breakfast. After almost 2 hours, the job was done. So the radiation will continue on for the next 2 days at 8am and 2 pm.

And of course things could just never go without event. Victor started to run a fever this evening. He is now on a broad spectrum antibiotic and the nurse did blood cultures to see if he has a bacterial infection brewing. This is not something that we want going on at this point, so please pray that the cultures remain negative and that there is not anything else going on.

Other than the fever he is feeling pretty good. He is still eating and playing, we got him to walk to Presby for the TBI. We need to keep him as active as possible while he feels up to it.

Thanks for checking in and I will talk to you tomorrow.
Apryle

Monday, May 2, 2005 6:47 PM CDT

Well, we are here at CHP and all settled in. Victor is doing good right now. Today was a very eventful day. He was scheduled for the placement of his broviac lines, the surgery went well and he recovered fine. From the recovery room he was admitted to the hem/onc floor, 8 north, which will be our residenence for the next 6-8 weeks. Once we got on the floor, the nurse got his IV fluids and flushes started. Well, one of the lines burst when she was flushing it, so the IV team had to be called in the repair the line. Not even 1/2 hour on the floor!!!!!

Things procede with fluids and then the dreaded IVIG infusion. this is something that is given to help boost the immune system. Reactions are common, and Victor had a reaction with the first infusion he got back in March. Well this time the reaction was a little worse then the first. First he got chills, then his oxogen level dropped off slightly. The nurse stopped the infusion, got the main transplant doctor, and they decided that Victor would not be able to finish up with IVIG tonight. They are going to discuss whether or not he will get it again being very heavily medicated or if he will get another form of it (which CHP does not typically use) We will see tomorrow.

Tomorrow starts the conditioning therapy......We are on our way to being cancer free!!!!!!!!!

I will post as often as possible, it is so nice to have a computer right in the room with us, a very easy way to communicate with all of our family and friends...

Thanks for the prayers,
Apryle

Thursday, April 28, 2005 8:33 PM CDT

This week has been very busy as expected. Victor has had cranial radiation each morning, in addition to clinic visits and work up testing on organ functions. Everything is going as planned, and all of the results so far are proving to be great. Which is wonderful, Victor will be getting his transplant being in a strong, healthy condition.

This afternoon we had a sit down with the main transplant doctor. He gave us the run down on all of the possible side effects and reactions of the pre-conditioning therapy and also from the transplant itself. For the most part he is not anticipating anything going wrong up front, but that is not to say that something unexpected can not happen. He is very, very optimistic that this is the right direction for Victor and the very best chance for a cure for his cancer.

We also discussed Cord blood with the doctor. He is very optimistic about CB. He recently attended a conference for BMT and he told us that Cord blood is now the perfered choice for children going into transplant. He was not disease specific, we are assuming he was referring to ALL. So this was very encouraging for us to hear at this point in time. He also solidified that Victor has a excellent cord donation. His match is great and his cell dose is quite large, which proves to be the most important aspect in transplantation of cord blood, the dose needs to be large enough for engraftment to take place. At CHP, engraftment failure is only 10% chance of happening, we will take that and run with it!!!!

One thing that he expressed concern about was a condition that could happen with the liver called VOD. Children who have been previously treated for ALL are at a moderate risk for developing this. It can be mild to severe. But he also told us not to dwell on it, that Victor's only strike against him is previous chemo, there are other aspects that contribute to the risk of developing VOD. For now, I will not worry about it.

So the plans are to be admitted on Monday. I got the doctor to agree to put Victor's broviac line in on Monday as well instead of Friday (tomorrow) This way he will enjoy his last weekend at home without being in any pain or discomfort from the surgery. On Tuesday he will start the pre-conditioning therapy which starts with total body radiation for 4 days and then three days of high dose chemo. It is a 7 day count down from Tuesday May 3rd. On day 0 the new cells will be infused, this will be Victor's RE-BIRTHDAY!

I will keep you all updated throughout our journey to cure! Thanks to all of our family and friends for the unconditional love and support, without you we would never pull through this!

Love,
Apryle, Vic, Victor and Nicholas

Sunday, April 24, 2005 7:38 PM CDT

First I want to thank everyone who showed up at the blood drive to donate. The drive had over 150 people registered and was one of the biggest that the High School has done....

The mysterious *ball* on Victor's port line turned out to be nothing more than a blood clot that dissolved after one hour of TPA in his line. Thank goodness that it was not a bacteria brewing, that could have put a damper on things.

Victor had his blood count done on Friday at the clinic and they are just wonderful:

wbc~4000
anc~2800
plts~83,000
hgb~10.5

All in a great range for a child who is recovering from high dose chemo.

We had the busiest week of treatment last week, everyday at the hospital and clinic, a couple of those days we didn't get home until 4pm, that is from 9am...... We were so happy to wake up Sat morning with nothing to do, I think all of us were in our PJ's until late afternoon.....

This week is going to be just the same. Victor will get radiation everyday at 10am. In addition on Monday we will go to the clinic after for blood work to test liver and kidney functions and also do some other necessary viral screening. Then on Thursday we will have the big sit down meeting with the transplant doctor. Friday after radiation Victor will have surgery to remove the medi-port and place the two broviac lines. He is going to be totally miserable because he will not be able to eat until after the surgery, and he will have to do radiation first which is at 10am. I am going to see if we can re-arrange this day a bit to make it a bit more accommadation for Victor.

Victor is feeling wonderful and his spirits are high. He has done so well with this new adjustment, it makes me the proudest mommy in the world.

Keep us in your thoughts and prayers as we get closer and closer to transplant...... May 2nd is the admission for total body radiation and then chemo and then on to new cells......

Thanks again to all of our loyal family and friends for the encouragement and prayers.
Apryle

Wednesday, April 20, 2005 8:56 PM CDT

Today was the first day of radiation. It went pretty smooth and very quick. It was over and done with in five minutes. Victor did very well and he stayed really still for the procedure. We were not allowed in the room, but there is a TV monitor that we could see him and talk to him on.

Victor also had an ECHO cardiogram and an EKG test done today. This is done in preparation for the transplant to make sure that his heart is functioning properly. It is but he did have one of those *odd* Victor things show up. On the tip of his port line that sits in the chamber of his heart, they were able to see a *ball* of something there. It could be one of two things. 1) A Fibrin Sheath, which is a part of the clotting process, it's the body's natural why of reacting to a forgein substance being there. It can be dissolved by using something called TPA which is injected into the port. Also a dye study will be done on the line to see if it is a fibrin sheath. or 2) A Vegetation, which is a ball of bacteria that collected there. That can be detected by drawing blood cultures and treating with antibiotics. If it is bacterial then Victor has to be totally cleared of it before he could procede with the transplant. Now the though is that it is not bacteria nd just a fibrin sheath because he is not symptomatic of an infection. No fevers, not acting sick etc, and he would have displayed one of the above symptoms by now. We will go to the clinic tomorrow morning right after radiation for the TPA, dye study and blood cultures.....

Yesterday at the clinic Victor had a bone marrow and a spinal tap done to confirm that he is still in remission and he is..... Both results are in and they are clear of any leukemia cells. It is very important that he go into the transplant without any visual signs of cancer cells in his bone marrow and fluid. So he is on the right track and we intend to keep on it.

And last, please remember the Blood drive on April 22nd in honor of Victor. You can go to journel history for the details.

Thanks for checking in as always,
Apryle

Monday April 18, 2005 9:03 PM CDT

Please don't forget to call Plum Senior High School and reserve your spot to donate blood on Friday April 22nd... The drive will be open to the public as well as the high school students. Victor will be the honored patient and The GLA is sponsering this event. Please call Mrs Shrout at (412) 795-4880 ext 8259 to register..... Remember how important it is to give blood, it can save many lives and like Victor there are so many others out there who depend on blood products to survive.
----------------------------------------
Wow, I think that the last ime I posted I said that I was going to get some answers as to when the transplant was going to take place, and I sure did. First, Victor is doing wonderful, he really has tons of enegry and is just enjoying his time at home. He got to go fishing with Dad over the weekend and we also took him mini golfing on Sunday. On Sat Victor was asked to go meet the steelers quaterback Big Ben, but unfortanetally his anc was not high enough to be in a crowded room full of people, but maybe next time. He didn't mind that much because he went fishing and caught 16 trout.

Today we went to meet with the radiologist who will be doing Victor's cranial/spinal rads and also his total body rads. To our surprise, Victor is going to be starting this Wed..... We thought that he was starting on Monday the 25th, but they are ready for him now, so why wait????? He got fitted for his mask that he will have to wear during the actual procedure, it is just a plastic mesh molded mask that he can see right through. It is used so that the children will be sure to stay very still during that radiation.

I thought that I was going to loose it hearing the radialogist talk about all of the possible side effects, but somehow I managed to keep it together. All toll, the cranial rads will be given over a five-seven day period, on an outpatient basis. Victor will receive between 1800-2400 rads, not quite sure yet which, they are still tossing it around because he is still quite young and they want to lessen the neurotoxicity.

Also on Wed, Victor will start the work up testing which will include and echo cardiogram and a pulminary function test, so we will have a very long day.....

So now let me just say that the closer we get, the more scared I am.... This is not fair at all, why?????

Tomorrow moring Victor will get another spinal tap done with the chemo injected into his spinal fluid. He has not had one done in 6 weeks so I am nervous about this... Please pray that the fluid is clear of any bad cells and that Victor is still in remission so that we can continue on to cure this beast that is within. And we WILL WIN this time, I am sure of it.....

Thanks for checking in and I promise to update sooner than later!

Love, Apryle

Monday, April 4, 2005 8:33 PM CDT

E-MAIL OPRAH

Please take a few minutes to read this and send an e-mail the Oprah Show in hopes to raise awareness of the National Bone Marrow Registry.......

I am writing to you because one of the biggest lessons we have learned in our journey these past 18 months is how important it is to raise awareness and educate the public about the National Marrow Donor Program. Most people don't know it is something they can do and that being tested is as simple as giving a small vial of blood. With 30,000 patients out there every year searching for a donor and 70f them needing to turn towards the marrow registry..we need to constantly increase the number of donors to increase potential matches for patients like Amy with leukemia, and others with aplastic anemia, sickle cell anemia and other life threatening blood related diseases.



Here is where you can help. One of our supporters would love to see us get on the Oprah show. Not just for Amy..but to raise awareness for all the patients looking for their marrow donor. Oprah reaches an incredible audience and has the power to motivate and move people into action. Statistics speak for themselves...5 million on the Registry since 1987. Over the past 18 years...20,000 unrelated transplants performed yet 30,000 looking each year. The statistics are against finding the match. The more donors we get registered..the better the odds of transplant and saving lives.



The plan is to have everyone we know and everyone you know...write a brief email to the show and encourage her to do a program about the importance of the National Marrow Program and educating the public. You can mention Amy's Army as an example of a small group trying to find a donor for Amy and helping others in the process. Refer her to the website(www.amysarmy.org) You can site any of the above statistics. A paragraph is all that is needed. We want them to sit up and take notice. If 1000 emails were received the first week in April..that would be something for them to think about! Won't you please help us help so many in need. Just click on this link...

http://www.oprah.com/email/reach/email_showideas.jhtml and submit the idea for a show on The National Bone Marrow Donor Program. Your help is greatly appreciated. If we all target our suggestions for the first week in April...we could have a huge impact. Please forward this email to everyone you know and let's continue to make a difference!



Thank you! Lisa
********************************************************************************


Blood Drive in Honor of Victor:

Where~Plum Boro High School
When~Friday April 22nd
Time~During school hours (will post the exact hours asap)

***Open to the public****

If you are interested in donating blood please call (412) 795-4880 ext 8259 and make a reservation with Mrs. Shrout. Victor is A , but all donors are encouraged to attend, there are lots of children (as well as adults) who need transfusions to survive... Please come out and help us save lives... We are trying to get the Central Blood Bank to also provide HLA screening on the day of the drive, not sure if they are willing to do so at this time.

AND FINALLY ****VICTOR UPDATE*****

Tomorrow moring we will go to the clinic for counts and if they are at a decent level Victor will be admitted for high dose Ara-c again.... He will stay for 48 hours when the chemo will be given every 12 hours and run for 3 hours at a time.

We went to the clinic on Thursday for counts and they were holding good:

wbc~8700
anc~4700
plts~37,000
hgb~9.6

For his chemo to be given his anc needs to be at least 1000 and his platelets need to be 75,000. We are hopeful that Victor's counts will be good!!!!! He is feeling pretty good for the most part and is not showing any signs of low platelets of hemoglobin. Usually his anc falls once he stops getting the neupogen injections, so we know that they will be somewhat lower, just not sure what?????

Prayer requests:

Please continue to pray for the Guartons Donna, Molly and Billy as they face this terrible tradgety of loosing a husband/father and battling leukemia. www.caringbridge.com/ny/mollyg

And of course for Victor, that we continue on the path to cure as uneventful as possible......

Thank you friends,
Apryle, Vic, Victor and Nicholas

Friday, April 1, 2005 8:39 PM CST

Sorry that I have not updated since we've been home, things have been busy around here as usual. We were able to leave the hospital on Tuesday afternoon. We got up in the morning and Victor's counts finally were at a decent level to be released:

wbc~1300
anc~780
plts~16,000 (he got a transfusion before we left)
hgb~9.6

We went to the clinic yesterday (Thurs) for counts again and he is still doing well:

wbc~8700
anc~4700
plts~37,000
hgb~9.7

Victor is going to be admitted again for high dose Ara-C on Tuesday April 5th if his anc is 1000 and his platelets are 100,000. If he is not ready to start, then we will have to wait until the following week... No delays.... We want to stay on track....

We know that a 5/6 cord is highly possible for Victor's transplant. We should know more of the details next week as to when the pre-transplant testing and conditioning will begin....

Victor is feeling well and is still getting home instructions from Miss Wilkie. He is also enjoying the warm weather and was outside taking walks and yesterday flying his kite.... He did have some leg(knee) stiffness this week, but that is caused by the growth factor that he gets to help his white blood count recover (neupogen) What happens is the neupogen causes the wbc's to grow rapidly and fill up in the bone marrow and puts pressure on the bones. He is done with the neupogen injections and has started to walk better already.

Now I would like to ask for favors/prayers for some of our friends who are also battling cancer and family tragedies... In March we were going to go on Victor's MAW trip to Disneyworld. Another family from our online support was also going at the same time as us, The Guarton's. We were looking forward to meeting them and spending some time together at Give Kids the World. When Victor relapsed we had to postpone our trip but the Guarton's still went and had a wonderful time!!!! Molly, their 4 year old daughter is also battling Leukemia and was on the same protocol as Victor for high risk ALL. Her mom Donna and I have spent lots of time getting to know each other and sharing experiences/advice. Donna was a great help to me when Victor relapsed. Now I want to ask all of you to send out prayers and support for Donna, Molly and Billy Guarton as they are dealing with a tremendous loss. On Tuesday, Donna's husband was killed in a terrible accident. The family is devistated... Please visit www.caringbridge.com/ny/mollyg and show the Guarton family your support and prayers.

Also a favor!!!! Here is a copy of an e-mail that I received from my new friend Lisa Katz. Her daughter Amy (from Amy's Army) needs a bone marrow transplant and has yet to find a good donor. Lisa is now trying to get help through the Oprah show, please take the time to read this and send a short letter to Oprah to show your support for the Katz family:

are still in the process of confirming

Thanks to all of you for the prayers and support,COPY OF E-MAIL:

I am writing to you because one of the biggest lessons we have learned in our journey these past 18 months is how important it is to raise awareness and educate the public about the National Marrow Donor Program. Most people don't know it is something they can do and that being tested is as simple as giving a small vial of blood. With 30,000 patients out there every year searching for a donor and 70f them needing to turn towards the marrow registry..we need to constantly increase the number of donors to increase potential matches for patients like Amy with leukemia, and others with aplastic anemia, sickle cell anemia and other life threatening blood related diseases.



Here is where you can help. One of our supporters would love to see us get on the Oprah show. Not just for Amy..but to raise awareness for all the patients looking for their marrow donor. Oprah reaches an incredible audience and has the power to motivate and move people into action. Statistics speak for themselves...5 million on the Registry since 1987. Over the past 18 years...20,000 unrelated transplants performed yet 30,000 looking each year. The statistics are against finding the match. The more donors we get registered..the better the odds of transplant and saving lives.



The plan is to have everyone we know and everyone you know...write a brief email to the show and encourage her to do a program about the importance of the National Marrow Program and educating the public. You can mention Amy's Army as an example of a small group trying to find a donor for Amy and helping others in the process. Refer her to the website(www.amysarmy.org) You can site any of the above statistics. A paragraph is all that is needed. We want them to sit up and take notice. If 1000 emails were received the first week in April..that would be something for them to think about! Won't you please help us help so many in need. Just click on this link...

http://www.oprah.com/email/reach/email_showideas.jhtml and submit the idea for a show on The National Bone Marrow Donor Program. Your help is greatly appreciated. If we all target our suggestions for the first week in April...we could have a huge impact. Please forward this email to everyone you know and let's continue to make a difference!



Thank you! Lisa
********************************************************************************


Blood Drive in Honor of Victor:

Where~Plum Boro High School
When~Friday April 22nd
Time~During school hours (will post the exact hours asap)

***Open to the public****

If you are interested in donating blood please call (412) 795-4880 ext 8259 and make a reservation with Mrs. Shrout. Victor is A , but all donors are encouraged to attend, there are lots of children (as well as adults) who need transfusions to survive... Please come out and help us save lives... We are trying to get the Central Blood Bank to also provide HLA screening on the day of the drive, not sure if they are willing to do so at this time, but we
Apryle

Monday, March 28, 2005 7:10 PM CST

Blood Drive in Honor of Victor:

Where~Plum Boro High School
When~Friday April 22nd
Time~During school hours (will post the exact hours asap)

***Open to the public****

If you are interested in donating blood please call (412) 795-4880 ext 8259 and make a reservation with Mrs. Shrout. Victor is A , but all donors are encouraged to attend, there are lots of children (as well as adults) who need transfusions to survive... Please come out and help us save lives... We are trying to get the Central Blood Bank to also provide HLA screening on the day of the drive, not sure if they are willing to do so at this time, but we are still in the process of confirming.
------------------------------------------------------------

Hello Everyone and Happy Easter.... We are still at CHP, but the good news is Victor's counts are on the rise:

wbc~800
anc~112
plts~23,000 (transfusion tomorrow)
hgb~9.7

Although his platelets and red blood counts are low, his anc is coming up and that is the most important number for now. He needs to be able to fight off an infection on his own before he can be taken off of the antibiotics.
we were told that possibly tomorrow Victor would be able to get out of this place if his percentage of monocytes (very important type of white blood cells) are up.... Keep your fingers crossed.

He is doing just great. The fevers have stopped and he is feeling good. Today was the first day that he was able to leave his room and go to the playroom and he was thrilled about that. We are here now and he is having a blast.

Easter was OK! We missed not being with Nick. I went home on Sat night and stayed with him, got up and found his basket and Victor's and was at the hospital again for 9:30am. Vic had just woke up when I got back and the Easter Bunny had came to his door with a treat. He liked that. Nick went to Aunt Vicki's with Gramma Audrey and Mimi and Pappy brought us dinner into the hospital. So overall, not all that bad!!!!!!

The next time I post I am hoping it will be in the comfort of our house, I will let you all know what is going on.

Peace out!
Apryle

Tuesday, March 22, 2005 7:08 PM CST

Blood Drive in Honor of Victor:

Where~Plum Boro High School
When~Friday April 22nd
Time~During school hours (will post the exact hours asap)

***Open to the public****

If you are interested in donating blood please call (412) 795-4880 ext 8259 and make a reservation with Mrs. Shrout. Victor is A , but all donors are encouraged to attend, there are lots of children (as well as adults) who need transfusions to survive... Please come out and help us save lives... We are trying to get the Central Blood Bank to also provide HLA screening on the day of the drive, not sure if they are willing to do so at this time, but we are still in the process of confirming.

Today was Victor's clinic apt... We got to the clinic at 2pm and his counts were drawn first. Well as expected everything has bottomed out:

wbc~400
anc~0 yes that is right ZERO
plts~2000
hgb~8.1

These are very low... He got a platelet transfusion today and he will probably be getting packed red blood cells on Friday, when we are scheduled to go back to the clinic for another chemo treatment. This is a run down of what normal blood counts are, so you can see how critically low Victor's are now:

wbc~4,000~10,000
anc~above 1000 is safe
plts~150,000~400,000
hgb~>11

Now we are on fever alert. If Victor gets a fever at this point he will be admitted in the hospital and blood cultures will be done to make sure there is no bacteria in his blood. Antibiotics will be started as a precaution. We also have to be extremely careful with Victor's activities with the low platelets. If he would fall, we are not sure that his bleeding could be controlled. So we are trying to get him to watch tv, play video games, and just do activities sitting on his BUTT....

As for Victor, well he is still doing good. Today he was a bit more tired than usual but that is due to the lower hemoglobin levels. He is still eating like crazy, which is good, being that he will most likely loss some weight during this treatment phase and the pre-transplant chemo and radiation. So he will have an extra 10 lbs to loose. Yes he did gain 10 lbs with the steroids....

Thanks again for the support!!!
Apryle
**************************************************************

Update Wed, March 23

Last night Victor was running a temp, so off to the ER. He is now inpatient with a zero ANC.. He is on IV antibiotic's and being momitored closely for infection. We had just got home last night from a long day at the clinic (2-7) and were right back down here at 10pm. We sat in the ER until about 3:30 am and then were brought up to a room. We are very dissapointed that the oncology floor is full and Victor is on a medical floor with *sick* patients...We have to be very careful that the persons coming in and out wash their hands very good. Victor also got a red blood transfusion last night. His hgb dropped in just 4 short hours for 8.1-6.4 when we got to the ER. He will need to get platelets tomorrow. Other than that, the fever is gone and he is doing well. I will post another update soon.

Thanks,
Apryle, Vic,Victor and Nick

--------------------------------------------------------------------------------

Update Thursday March 24th

Victor is still here at CHP... He is doing well, and feeling well. His cultures are still negative for any bacteria in the blood stream which is a plus, but the fevers are coming and going. He had a temp at 1 pm this afternoon, the the onc did another culture. His counts looked a little bit better this morning:

wbc~400
anc~ still 0
plts~26,000
hgb~10.4

So as soon as the doc sees that Victors counts are on the rise then he will get to come home. Hopefully for Easter....
Thanks for checking in.
Apryle and Victor

Thursday, March 17, 2005 5:36 PM CST

Well, we got home from CHP at 1pm this afternoon, and let me just say that nothing is ever *cut and dry* when it comes to Victor. All started out good on Tuesday. We went to the clinic to get Victor's counts checked and they were great:

wbc~6000
anc~4100
plts~111,000
hgb~13

So the admission was a go. We were sent right up to 8 north (the oncology floor) and to our surprise we were put in a shared room for the very first time ever!!!! Well, we got to spend our 48 hour admission with a great family from Erie, PA, The Pagano's. It actually made time go a little bit faster having someone else to talk to and compare notes with. Their 7 year old son Nicholas is battling with Neuroblastoma. They have just found out that after almost four years from his diagnosis, he has had a relapse. Please keep the Pagano family in your thoughts and prayers as they are also making very critical discisions re: Nicholas' treatment. Colleen, if you are reading this it was great to getting to know you and if we ever have to share a room again we hope it is with you guys!!!!

Around 3pm on Tuesday Victor got his first treatment, HD ARAC. It went pretty smooth and he was feeling OK. Along with the arac, Victor had to get drops in his eyes (not really sure why, but he got them, standard for HD arac) He was hooked up to the IV machine where he got his chemo and fluids. His next dose was given at 3am. This infusion runs for over a three hour period. Around 5am I woke up to Victor breathing very heavy in his sleep. I called in the nurse and he was concerned so he hooked Victor up to the heart monitor. Well, I just about jumped out of my skin when I saw his heart rate was 150 some beats per minute (Victor usually runs about 90-100) Dr. W came in the morning and told us that he felt the increase in his HR was due to the 28 days of steroids that Vic just finished up with on Monday. We were fine with that, except later in the day the HR started to increase even more and Victor was now running a low grade fever!!! His HR went up to 180-190 bpm.... We were freaking out (well, I was not as bad as Vic, I was taking everyones word that it was due to steroids and nothing else)

Dr. W ordered an EKG that came back high but normal rythem. So then I felt a little bit better. The entire time the HB was up Little Victor was fine. He was playing games and doing some of his school work/crafts. He was well hydrated, his hemeblogin was normal and his temp went down.

Around 4pm Dr. W told us that they tested Victor's IGG levels (this is a antibody that helps give the immune system a boost) and his were low so he needed to get an infusion of IVIG (normal IGG levels fall between 499-1000) Victors level was only 233. The nurse came in with a whole list of possible side effects from the infusion. Some of them include (listen closely) RAPID HEARTBEAT, FEVER,CHILLS,LOW BLOOD PRESSURE. Knowing that Victor was already having a high heartbeat and low grade fevers, we were sort of leary about the infusion, but everyone on the medical team felt comfortable giving Victor the IVIG. So about 8pm the nurse gave Victor a dose of benedryl (to help if there is a reaction) and started to run the antibody, he started it slow, then after 15 minutes increased the speed that it ran just a bit. He was going to increase the drip for the third time when Victor started to get chills and was very cold. We looked at the heart monitor and it was reading 220-240 bpm......WOW, it was scary, the nurse (who btw, is a great nurse) went out of the room, got the doctor, and more benedryl and stopped the infusion. At this point Victor spiked a fever of 40.0 (which is around 104) He gave Victor tylenol to bring the fever down.

The doctor came into Victors room in shock at how high his heart rate was. She put her stethascope to Victor chest and listened????? Not getting 220 at all, she listened again???? Nope still not getting 220, if fact she wasn't getting 200 or even 180!!!! She was only getting 132 bpm, and that was after the fever, the chills, and the tramua of Victor's body receiving an antibody. The heart monitor was wrong all day!!! Yeap, we were a nervous wreck all day for practially nothing. Not saying that Victors HB wasn't high, it was, the EKG showed that, but it was only 140 at the highest point. Added stress from a computer!!!! Let me say that we slept well Wed night!

Victor got the remaining Ara-c and we were able to come home this morning. His counts have already dropped especially his platelets:

wbc~1700
anc~1040
plts~37,000
hgb~9.2

The home care nursing is coming in the morning to check Victor counts. We are anticipating that Victor is going to need platelets either by Sat, or Monday. Given his history with platelets we are probably going to be admitted on Sat for outpatient short stay for a platelet transfusion. Victor will get his next chemo treatment on Tuesday at the clinic. It is given in a shot form in the leg muscle.

Other than that we are glad to be home. We missed Nick like crazy!!! He missed us so much that when we got home he went down stairs by himself and played playstation 2. Whatever Nick!!!!

So now I need to get back on my high horse about how important it is for all of you who can donate blood and platelets to do so. There are kids out there just like Victor who depend on all of us for blood products. Please, please donate.... Visit Amy's Army (click on the link above) for more information about donating blood and also becoming a bone marrow donor. Kids who are going through chemotherapy and transplants require several transfusions. (some need up to 20 and more platelets and 20 red blood cells) Plum Senior High school's GLA is going to hold a blood drive in Victor's name sometime in April (will post the date asap) It will be open to the public. I encourage everyone to come and same a life!!!

And last on the transplant front, we got to talk more the the bone marrow transplant NP, he told us they are now looking at a 5/6 cord for Victor!!!!! This is the best news that we got yet!!! Keep your fingers crossed that it proves to be a good match for Victor. There are also a handful of other cord options availabe to look at if this one in particular is not the one!!!

Thanks again for checking in on us, and remember to leave us a quick note letting us know that you stopped by to visit....
Love and Prayers,
Apryle, Vic, Victor and Nicholas

Thursday, March 10, 2005 9:44 PM CST

Hello to all! I am happy to say that Victor is feeling pretty good this week. He still has a cough, but it is *only a cough* nothing to get all worked up over. He had a clinic visit on Tuesday with Dr. Wollman. He got his last treatment for the reinduction phase. His spinal tap went very smooth, Victor slept through the whole procedure. His fluid remains clear of any cancer cells, so he is still in remission. For getting 4 weeks of intense chemo his counts are holing up very nice:

wbc~7300
anc~5500
plts~145,000
hgb~13

These are pretty *normal* counts, better than his have been in quite some time. But after this week we will see a drastic fall and expect to see them low for quite some time. Beside the steroid eating freenzy and mood swings, Victor is feeling good. He has lost most of his hair, so we shaved his head again, it doesn't even phase him, he likes to be bald!

His energy levels have been high so I took him on Wed for a private karate lesson with Mr. Jeff. I could tell by the look on his face that he was shocked at how much hair Victor had lost in just one week. He was very open with Victor to discuss treatment and why he was losing his hair. He told Victor that it is important that he like who *he* is no matter what he looks like, and reminded Victor how important it was to believe in yourself. Karate is a great distraction for Vic and as long as he is feeling up to going, I will take him. He did very well with his balance again, and also kicking!!!!

Another good distraction is Miss Wilkie coming over 3 days a week to teach Victor. He loves seeing her and talking about all of his classmates. She makes him feel like he is still a part of the class by having him do his show and tell, she brings snack time with her, they do story time in the livingroom (instead of on the square rug at school) They also do computer games, art, she brings his library book home for him, learning centers, and he is right on track with his accelerated reading tests!!! Every one should have a kindergarten teacher like her as a role model (or like Marey~Ali's mom :-)

On Tuesday next week, Victor will be admitted for high dose chemo (A.K.A~CHEMO THAT WILL KNOCK YOU ON YOU BUTT) He will probably be in the hospital for two or three days. This will all happen counts pending, so keep your fingers crossed that his counts are good enough to get the chemo, at this point we don't want any delays in treatment!!!

Thanks again for the prayers and support,
Love, Apryle, Vic, Victor and Nicholas

Monday, March 7, 2005 6:40 PM CST

Today we go to meet with the BMT dr, Dr. Goyal and the Np Jason. I must say that all in all, they did a great job at answering all of our questions and acknowledging our concerns. With that said, the decision to stay that CHP is a more than likely one. Both Victor and I feel that CHP has the knowledge to give Victor the best possible treatment options out there. We are at peace with the decision to stay home. That doesn't mean that we are not going to consult with other hospitals to get second opinions, it means that we have chose our transplant center.

We got some preliminary results in from the BM search. As of today ther are 6 possible bm donors for Victor (being 6/6 match) They need to be reviewed a lot closer before we know for sure. 6 out of 8 million people is not really that many, but hey we will take it at this point as the searching will continue to go on. They doc told us that Victor's tissue type is not a *typical* garden variety, but it is not the rarest either, he falls somewhere in between. Why does this seem to be our case throughout this journey with leukemia, first his age for radiation was right around the age for congitive problems to develope, so we were put in a position to decide to delay radiation. Then his relapse was right on the cut off of being a late relapser (20 months from dx) which then put us in another position to choose between relapse protocol or transplant. And now his tissue type is not all that common, but not the rarest of rare either. UGH, this sucks! They are still looking in the cord blood banks and feel very confident that they will find a very good, to excellent cord for Victor.

Let me re assure you all that I am feeling much better in knowing that we will be staying in PGH for the transplant. It is very important to us to know that we are at home and surrounded by our wonderful family and our great network of friends, we love you all and I don't know how we would get through this without each and every one of you!!! You all are a part of this journey with us as we battle to defeat leukemia again!

I will post agin after Victor's apt tomorrow, he will get his last LP and chemo for re induction, and he will also get his IV antibiotic pentamidine. Then he will be scheduled to go inpatient for high dose chemo on March 15th counts pending. Here's to clear fluid and a smooth precedure tomorrow.

Love and Prayers,
Apryle

ps. thank you Aimee for the St Peregrine Pendant, we will wear it from her on out!

Saturday, March 5, 2005 4:16 PM CST

Well as most of you already know we got the results back from the HLA testing and Nicholas is only a 3/6 match! Not good enough for a BMT. On Monday we are going to meet with the bone marrow team at CHP and get more information reguarding our decisions. They already started to search the donor regestries and cord blood banks for a good donor. We should know some preliminary results then. This will be the first time that we are meeting with the director of the BMT. We are hoping to get all of our questions answered and feel comfortable with his experience in doing cord blood transplants. We are seeking a second opinion from a hospital in North Carolina, they specialize in cord blood transplants. We have received a packet of general information already from them, but again, if we feel comfortable with Pgh than here is where we want to stay! Out support system here is so awesome. We have such wonderful family and great friends we are here for us no matter what we need!

Victor is feeling pretty lousey this weekend, but not from the chemo he has a cold. He is on zithromax and delysum for the cough! This is a terrible time for him to get sick. We hope that he kicks it in the but now so that he can keep on his course of chemo. No delays this time around. As for the side effects of the meds, his hair is falling out like crazy, he has some muscle weekness, but other than that he is feeling pretty good. No nausea so far. He really didn't have it before either.

His teacher came three times this week. It was good for him to be able to get his mind on something constructive!

I will post again on Monday to let you all know how the consult went! Thanks again for the prayers and support!
Love, Apryle, Vic, Victor and Nicholas

Tuesday, March 1, 2005 6:33 PM CST

March 2nd Update!!!!!!
********************************************
Well it looks like the direction that we are going to go in now is to search the bone marrow and cord blood registeries for the best possible match for Victor. We just got the call that Nicholas is only a 3/6 HLA match. We ask you all to pray that we are able to find a very close cord blood match and that the process is quick. Even though we are not *pressed for time* as of now, we do not want to linger around and let something *pop* up while we are in the transplant process. Pray, pray, pray!!!

********************************************************
March 1st


Today was Victor's third treatment since his relapse on Feb 12th. I must say that considering what his body is going through, he is doing well! The results of the spinal fluid are clear of any cancer blasts, meaning that Victor is in remission. His blood work is still looking good! Here is what his counts looked like today:

wbc~4000
anc~2700
plts~140,000
hgb~11.7

They have dropped from last week, which is what you expect to see from a child on chemotherapy, but they are still looking good!

We still do not know the results of the HLA testing to see if the boys are a match for the BMT, so all of the decisions that need to be made are put on hold until we know for sure if Nick is a match....Pray extra hard that this Gods will....This is the best case senerio for Victor.

Today we talked to the physicians assistant for the bone marrow transplant team. Boy did she really open my eyes to how invasive transplant is going to be!!! I know that it is not going to be the *easy* way out, but I guess I have been avoiding side effects and risks with transplant! I think it was her words " His body is really going to get SMACKED" that did the job for me. Just when I thought that I was readjusting to this again, I get knocked out of whack.

I left the clinic feeling uneasy with where we are going re: transplant. Dr.W first told us that he would not transplant Victor is Nick was not a perfect match, that Vic would follow a relapse protocol. The next week he suggested we look into cord blood as a second option if Nick was not a match. Now this week he tells us that we are going to look for the best possible match BM or CB, which ever is the best match. Well, I was under the impression that he felt that an unrelated bmt would be to risky, and we would be best to go with cord blood if this turns out to be the case. Now I feel like all of my questions are being dodged until we get the HLA test back.
I guess we will just have to wait for another week or so before we are more secure with the decision.

On the home front Victor is doing well. He started homebound instructions on Monday. He was so happy to see his kindergarten teacher Miss Wilkie. She did lots of school activities with him and also gave him some fun things to do at home. Victor also went to a private karate lesson which he really enjoyed. He is going to do so every week as long as he is feeling up to it. He did great with his balancing, and kicking. It was so good to see him moving around again. Aside fron tummy cramps here and there, he is feeling pretty good, just eating like crazy. He is getting so puffy from the steroids. His tummy is really round and makes it hard for him to bend at the waist. He cannot stand it! Me either, Only 2 weeks left of decadron!

Well, I will post again soon. Thanks again for the continued prayers and support!
Apryle

Wednesday, February 23, 2005 7:11 AM CST

Friday, Ferurary 25th Update

Just a quick update. I spoke to Dr. W yesterday about Victor's spinal fluid results. he explained to me that Victor had no circulating blasts in his fluid and that it is normal to have under 5bc's in the fluid. So I am very very happy to say that as of Tuesday Feb 22nd Victor is back into REMISSION!!!!!!!!

****************************************

Good Morning! I tried to update yesterday after Victor's clinic apt, I typed my entire journal and when I went to add it on his page, somehow it was erased, I gave up and went to sleep.

Yesterday was a big day for us, especially Victor, he had an LP (spinal tap) and was NPO (which means that he cannot eat before the procedure) so for those of you out there with a child on steroids, I know that you are feeling me. His clinic apt wasn't until 11:30, when we got to the clinic it was so busy there that Victor did not get his LP until close to 1pm. he was fit to be HUNGRY. At one point he through a major fit. He was screaming and yelling, that really got the staff moving, and within half an hour the LP was done. The results of the spinal fluid show that the white blood cell count is one. We were hoping for zero, but we will take one. That is down from 154 the day we found out about the relapse to 26 four days later and now to one, one week later. next weeks LP should put Victor back into remission. Victor also got his IV chemo through his new port (which, BTW, worked YAH) This was his second dose and his counts are wonderful:

wbc~11.2 (steroid induced)
anc~10,000
hgb~12.6
plts~150,000

Victor ate like crazy after the test was over. We packed his lunch, he ate grapes, yorgert, graham crackers, hot fries, fridos, a brownie, and we stopped the the Original hot Dog, he ate a hot dog, fries, and when we got home he ate soup, and a bowl of yummy beef stew. Then later on he wanted pizza, so Vic went to pizza hut and got him that too! WOW, can you imagine a 6 year old eating all of that in less than 6 hours!

I got to talk in length with Dr. W about treatment vs. transplant. He has been weighing the pros and cons, given Victor's situation on his first treatment plan. We all know that Vic was very slow at recovering from each phase of chemo, he had lots of delays in treatment, so we are rethinking the decission that if Nicholas is not a perfect 6/6 bone marrow match, we are going to look for a good Cord blood match. I am still in the very early stages of gathering info on CB, but from what I have learned from my friendS from All-Kids, especially Kerri, who's son had a CB transplant last year,the data on CB is great. The risks of developing graft vs. host disease are less than with a BM transplant and the match dosn't have to be as close as BM (you could use a 4/6 CB match with a good prognosis) if you want more info right now on CB transplants, visit Spencer's website. He is a little cutie who has come so very far in this fight against leukemia. Kerri is so knowledgable, she has a lot of really good info, and she is very encouraging to listen to. She also has pictures posted of Spencer's actual transplant, check them out at www.caringbridge.com/ca/spencerrocket

Thanks for the continued support, I will post again soon!
Apryle

Thursday, February 17, 2005 8:05 PM CST

Today was a weird day. It feels like I am in a fog. Just this weekend we found out about the relapse and now we are at home, trying to be normal! And then it hits after not thinking about it for a split second, we are right at the beginning again. But Victor is doing good, and that is what is important. I took him to a private karate class this evening. We are going to try to keep up with karate, as long as he is feeling well enough. He was so happy to be there, but I could tell that he was not *into it* the way he was before.

The side effects of the steroid (decadron) are already starting to kick in. Victor is eating every ten minutes. He is very moody and irratated about everything. Only 24 more days of deca to go!

I want to take the time to thank all of our friends and family for the awesome support you all have shown us over these dreaded days. Also special thanks to our friends ( Jesse, Dave, Doug, Kenny, Eric and Bro's) for the two portable DVD players and DVD's for the boys. Thanks to Megan and Michelle (and their families) for the Lasagna dinner and dessert. Thanks to Susie and Jimmy (and Moose) for the awesome gift basket all the way from NY! To Gerry and Cindy for the Toys r Us gift cards. Thanks Andy and MJ for the beautiful balloon bouquet! And most importantly to all of our family and friends for the prayers sent up for Victor's healing! We are in this for the long haul with you all behind us!

Love and Prayers,
Apryle

Wednesday, February 16, 2005 2:51 PM CST

Well, for those of you who don't know we are home. We came home yesterday afteroon around 2:00. Things are looking up! I got to talk to the doctor about Victor's prognosis and he seems very optimistic that Victor will be cured for the second time. I hate to say cured because with leukemia there is not a cure, just a good chance for it. So we are still in the game, and actually Victor's chance is still around 70-75%. So now the game plan is to wait for the HLA testing to be done on Nick and if he is a perfect match we are heading to transplant, if not the ONC asurred me that Victor still has a great chance following the realspe protocol, but our best case scenerio is for a perfect sibling match.

The thing that is most upsetting to me is that he has to do this all over again. We are back to square one. Chemo,clinic apts weekly, fevers, low counts, and now the scheduled inpatient stays for higher doses of chcemo. UGH, makes me want to scream, and I have. But that is not doing any good. I feel spread way to thin right now and cannot imagine that I have to remain strong for the next year +. I know I will do it, I have no choice, but it is going to be hard, so for those of you close to my heart, forgive me now what what I might do or say over these next few months. I have a goal and a one track mind and that is making sure I make the best choices for my children.

On the home front, Victor is going strong. He WILL, no doubt, be my strength through this.

Nicholas is still the MAN! They are great kids with such a great network of family and friend to love and care about them.
Love and Prayers,
Apryle

Monday, February 14, 2005 9:02 PM CST

In spite of the relapse we got some good news to report today. The relapse is isolated to the CNS fluid. No Bone Marrow relapse! Also the amount of white blood cells in the fluid has gone done from 154 to 26 from the IT methotrexate Victor got in his spine on Thursday. We are resting a bit easier tonight with this news. Although we are very greatful for these results, we are still facing a relapse, more intense chemotherapy, inpatient stays and the possibility of a bone marrow transplant only if Nicholas is a perfect match. The risks of an unrelated BMT opposed to following a relapse protocol are greater for complications. We are confident that God will guide us in the right direction. Thank you all for the encourging words and support during this emotional roller coaster.

We are going to start re-induction therapy tomorrow which is vincristine, decadron and dauno/doxo (cannot remember which one) Victor got his first TIT today and suffered a terrible headache. We are not sure if the headache was just for the trauma of the port surgery, and coughing from the breathing tube or the LP. I hope that was not an indication of how the triple's are going to go. Victor will more than likely get to go home tomorrow!

Love and Prayers,
Apryle

Saturday, February 12, 2005 8:24 PM CST

My heart is broken as I have to tell all of you that Victor has relapsed in his spinal fluid. We are at CHP and he is going to get an LP tomorrow to see how many wbc's are in his fluid. He will have a bone marrow asperation Monday to rule out a complete relaspe, as of his blood work this morning he has good counts and no blasts present, but that is not a 100hat the cancer is not in his marrow. Pray hard for him and for our family that we get through this and that Victor reaches remission quick this time around.

Apryle
****************************************
*************Update*********************
Victor's labs are back this morning and they are still looking good. Here is what they were yesterday
wbc~6.1
anc~ unknown
hgb~13.6
plts160,000

today's counts:
wbc~3.8
anc~2600
hgb~12.3
plts~160,000

this is a good sign that counts are holding steady and no cancer cells are showing up. We will not know for sure though until a BM is done tomorrow. He is still sleeping, but fever free, hope the ear infection is gone. I will update soon.

Apryle
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Sunday night update~
Nothing new to report, the LP did not take place today, he will have it as well as bma and port placement at some point tomorrow, he is on the *add on* schedule so it could be any time during the day tomorrow. As for Victor, he is acting like his same cheery self, aside for one headache, mild pain wise. He had another ct scan done b/c the onc thinks he may also have a sinus infection by the looks of the mucus he is discharging from his nose and eyes. He also coughed up a lot last night. This is not related to the leukemia, but could be a source for the headache and fever yesterday. His room number is posted below, feel free to call and give encouraging words.
Apryle

Tuesday, January 18, 2005 1:41 PM CST

Call me the slacker! But between the Holidays,Victor getting his port out, flooded basement, the stomach flu,and Victor's birthday I couldn't seem to find enough time, or effort to sit down and type in an update. So sorry. I do have a lot to share as you can tell by my first couple of sentences.

First the boys had a great Christmas and New year! Well, all except for Victor getting a fever on Christmas eve day and being at the ER until 2:30 in the afternoon, but better than it happening on Christmas day! The fever turned out to be nothing and he was fine for the rest of the Holiday!

On December 29th, Victor had his port removed. He did fine witht he surgery but was sick for a day or two from the anistesia. It was a hugh relief for Vic to get his port out. I am happy now that it is all over with. He got his first IV treatment on the 13th since the surgery and he did fantastic!

Then came the rain! On Jan 5th one year from the very first flood in our basement, the water started to come in again! UGH!!!! We were luck that we decided not to put the carpet padding back down, so we were able to pull back to carpet and move the furniture out of the way! But the rain did not want to stop, so I spent the entire night up mopping and sweeping the water away! I hope that we don't get that much rain for a while!!!!!

On to the tummy bug! School started and all was fine on the home front. In fact the nasty cough that Victor had for over a month went away over the holiday break. It was good to not hear the poor child hacking. But then along comes the tummy bug, first Victor, then the next day Nicholas. Victor seemed to get better within a day or two but poor Nick, it just lingered on for him from Tuesday until Sat. Now he is scared to go to the bathroom in fear that it is going to be a *bad poopie*. I thought that it was all over on Sunday when Nick did not have any symptoms of the bug, but low and behold, Daddy got it! Sheesh!!!!! I am sweeting bullets by now, praying that I don't get it, If Momma goes down, so does the entire house. So far so good(knock on wood). Dad is feeling much better today and will return to work tomorrow.

Victor celebrated his 6th birthday on January 15th. He had a bowling party at Nesbits Lanes with 12 of his friends! They had so much fun. I still cannot believe that my baby is 6. He was so little and seemed so much younger when he was diagnosed with leukemia 19 months ago. I guess this experience has forced him into growing up faster than most kids his age. Don't get me wrong he is still a kid at heart, but he just knows so much for his age. Like being able to tell you his list of meds, or being happy that he is going to get the sleepy medicine before he gets his *back test*. He has grown from a 4 1/2 year old little boy into a 6 year old young man right before my eyes!!!! Funny you don't realize how thinks change until you sit back and take a good long hard look at the past!

Friday, December 24, 2004 11:03 PM CST

Merry Christmas to all! It is 12am here in Pittsburgh, and I cannot believe that Christmas is here. I am so excited to see the looks on the boys faces in the morning when they see all of their gifts under the tree, but will take a big sigh of relief when it is all over.

Things have been pretty decent around here until last night, Victor started to run a low grade temp of 100.2, so of course I did not sleep the entire night constantly checking him to see if it was going up. Thankfully it did not, it just teetered right around 100. So I called the clinic (which was close because of the holiday) and we were told to go to the ER even though the fever was down so the doc could give Victor a dose of IV antibiotics just incase the fever would return tonight, then we would not have to run to the ER in the middle of Christmas eve. So far no temp all day (knock on wood) Victor is still coughing, over 3 weeks now. And now Nicholas has the same terrible cough, only his is waking him at night.

Victor went to the hospital on Friday last week to get the dye study done on his medi-port line, and another sonogram was done first and the line is back up in his neck, so the study was wiped out and now we are on a new route. Victor is going to have his port removed. We have opted to go with out a port for the remainder of his treatment. Of course we discussed it with the onc first and he said that as long as Victor was OK with the perpherial IV's monthly then that was fine with him. I asked Victor what he thought and he sounded thrilled to get his port out and keep it out! The surgery will take place on Wed the 29th. He also got his chemo and spinal tap that same day and things went very smooth! The nurse did the perpherial IV on Victor and he didn't even flinch, for his LP also! These are the times that I am so proud of him that tears well up in my eyes, but I hold back because I don't want him to see me cry, even if it is because I am proud of him, In a way it is because I am proud of him for taking all of this with a grain of salt when a child at 5 years old should not have to be doing any of this al all! If that makes any sense at all!

Well, I better go and get some rest, Santa will be here soon and I don't want him to think that I am on of the kids up on the computer. Merry Christmas to all and to all a Healthy, Happy New Year!

Love,
Apryle

Sunday, December 5, 2004 8:06 PM CST

Hey everyone! Again, it has been long between posts, but my computer time is limited. I thought that things would be a bit easier once Victor started school, but NOT, I still cannot seem to find enough time during the day to balance, Nick, cleaning, errands, etc. But whoever said that I was Wonder Woman? Anyhow, I have lots to update. First, Victor's counts were great last week when he went to the clinic:

wbc~3200
anc~2600
hgb~13.2
plts~141,000

His anc is a bit on the high side, but because of the platelets still teetering on the lower side of normal, Dr. W is not going to increase Victor's chemo until we see a rise in the platelets. His Hgb is higher than it has been since before he was dx! So this was the day that Victor had to have his port line fixed. He did great with the procedure, which he was put under general anistesia for at the Interventional Radiology department. The doc had no problem at all fixing the line (fyi~it was in his jugular vein and it should have been pointing towards his heart). The problems started to occure in the recovery room when he woke up with a croupy cough, so the nurse gave his a breathing treatment and that seemed to help for the time. (it is three days later and the cough hasn't got any better)
He needed to lay flat for 2 hours in recovery before he could go home. Mind you this is a growing boy who has not had anything to eat since 9pm! And the nurse in recovery was not willing to let him eat at first until I told her that he does very well with drugs (we all know that he has had his fair share) So she allowed him to have a cold drink and dry crackers. That was good for about 2 minutes and he started to ask for snacks out of his clinic bag! Poor Vic! All he wanted to do was eat, and he had to wait until we were out of that stinky recovery room.
So time is up and the nurse prepares to hep lock his line and guess what? Yeap, the line STILL would not flush without resistance.
Also I forgot to mention that the radiologist thinks that Victor's line is too short, it is just sitting at the tip of his heart and should be a little longer! Well, he has grown 5 inches since he was dx last year! So now we are thinking that he is going to need his port replaced before he finishes chemo (Oct 2006)
This coming week I will have to take Victor back it IR for a dye study to see if they can get to the bottom of why his port doesn't want to flush. He has a great blood return, but resists a flush!

Today we went to the Candlelighters Christmas party! It was so amazing! The boys had so much fun and tons of great gifts. The entire back of our van was filled with presents! Thank you candlelighters for letting us be a part of such a great event!

Also today I gave Victor his first haircut since before dx! It was getting curly in the back and he did not like the curls (I LOVED THEM) For those who knew him as a toddler remember his hair back then? My baby is back! Anyway, he wanted his hair cut, so I cut it. And of course he looks so handsome. I took before and after pictures and I will post them as soon as I get them developed! (not digitally inclined).

Nick is doing great! I have had lots of one on one time with him and he is starting to learn his letters and numbers and sing his abc's! He tells me all the time that I am the greatest mommy in the whole wide world! I am glad in away that he was so young when all of this craziness started, because he doesn't remember me not being there for him, I do though, and will never stop feeling bad that I did not get to do all of the fun, normal things with him that I did with Vic when he was little! Maybe I shouldn't feel that way but when I think back to when Victor was Nicholas' age, and all of the things I did with him, I cannot help but think that Nick was negelected. I know that I had no choice, and that is what sucks!
Enough with the pitty stuff! Thanks to all of our loyal supporters as always and have a great Holiday Season!

Love, Apryle

Friday November 19, 2004

Just a quick update from yesterdays post, Dr. Wollman called around 3:30 and he scheduled Victor for out patient surgery to get the line put back into place. We have to go to the clinic first so that Victor can get his post accessed and then to short stay for the procedure. Keep Victor in your prayers today that all is uneventful.

Today Victor had a clinic apt for a spinal tap, IV antibiotics and IV chemo. Everything went very well! We finally, after three months got to see Dr. Wollman. What a difference seeing him makes. The spinal tap went very smooth and the fluids look crystal clear! YES!!!! Counts were awesome! Here is what they looked like:

wbc~2300
anc~1700
hgb~12.1
plts~146,000

All great even the platelets. Dr. Wollman decided that the doses of oral chemo that Victor is taking at home every night is just fine for him right now. He is on a reduced dose because of the steady drop in the platetes for the first three months of LTM. He is also on a reduced dose of oral Methotrexate which he takes 6 pills instead of 7 every Thursday night. We will go back to the clinic in two weeks just to make sure that Victor's counts are staying steady where they are.

So, every good day has to have a glitch in it right? Ok not for all of us, but for me, yeap! We are getting ready to leave the clinic and Victor's nurse went to flush and hep lock his line and she could not push the syringe at all. Weird! This has happened to Victor before. So Rose put TPA into his line (which is used to dissolve any clots or old blood that is clogged in the line) In the mean time Dr. Wollman wanted us to get an x-ray to make sure that the line was in place.

Now let me back up a bit to last year (cannot remember the date) Victor went to the ER for fever and neutropenia and had a routine chest x-ray done to rule out pneumonia. Well, pneumonia was ruled out, but the x-ray tech pointed out to Dr. Wollman the Victor's line was up in his neck instead of pointing down towards his heart! WHAT!!! Yes somehow the end of his line was pointing up into his neck. So we had to schedule an out patient radiology surgery to pull the line back down. Well, we went in the following week, Victor got the incession in his groin, the Doc put the instrument in and up towards his port, the whole time watching a sonogram type monitor. He did not realize until he was at the line that the problem had corrected itself! Yes, the line somehow floated back to a downward position.

Now back to today! We got the x-ray donw, and sure enough I could see for myself that the line is pointing up towards his neck again. I should be hearing from Dr. Wollman soon to see what we are going to do to correct the problem this time, if it doesn't correct itself. But I am thinking that something should be done even if it goes back down by itself, it could happen again, because his line is going to be there for 2 more years! Also, Victor has been hoarse for quite sometime, with no sore throat or viral symptoms. I am thinking that maybe the line is irritating his throat or his voice box. I could be totally wrong, but nothing is out of the question when it comes to the world of ALL!

I will update as soon as I get more info, but for Victor, he is just peachy, in fact he is happy to be starting steroids tonight! He Keeps chanting "steroids, steroids" He says he really likes to eat! I could do without the mood swings, but whatever makes him happy! He is also doing really good with the Accelerated reading program. He has taken 3 tests and got 100n them all. He is reading so good and he loves it!

Thanks for the continued support!
Love, Apryle

Monday, November 8, 2004 5:40 AM CST

It is really taking me a long time to get updates on this page and for that I am sorry. But I guess it is a good sign, right, no news is good news!

First counts, I have two weeks of numbers to explain to you all. Victor was off of his oral chemo for a week and here is what his counts looked like:

wbc~3100
anc~1000
hgb~11.6
plts~166,000

We were concerned about his platelets being on a stead drop for the last month, so coming off of chemo helped, but he CANNOT BE OFF CHEMO. So he was put back on but only on 75f both methotrexate and 6mp. We went to the clinic Thursday the 4th and counts were:

wbc~2300
anc~1500
hgb~12.5 (all time high for Vic)
plts~94,000 (down again)

So now we wait for the results of the enzyme test that was done a week and a half ago. I should have some answers today. If his platelets would stay within the normal range (150,000~450,000) then his counts would be perfect for this part of his protocol. I will update as soon as I get answers from the clinic.

Halloween weekend was so fun. First on Friday Victor had his party at school, and I got to go help out. It was so cool to see all of the kids dressed up and parading around the school. Victor was spiderman along with two other students in his class. Then on Sat, Mimi and Pappy had trick~or~treating at their house from 1~3, so I took the boys over there and met up with Auntie, Nico, Dominic and Little Kenny and we went around to a few houses. On Sun we had the MAW Halloween party which was so awesome! The boys had so so so so much fun. Nick was a little wild, but he sure did have a good time. They had a DJ and trick~or~treating around the banquet hall. Snacks, pizza and a magician too! We came home took a quick rest and then it was off to grandma and pap's house for some more candy! Nick decided that he had enough, so he stayed back at gram's house, but Victor was full force and he went out for the evening with his spiderman pillow case filled to the top when we got back! Who is eating all of the candy? Yeap, and I got the complection to prove it!

On Monday Nov 1st, I had parent/teacher conferences with Victor's teacher. I was very pleased with his report. In fact he tested very high on the Star early literacy test, Miss Wilkie wants him to do an advanced reader program. Can you believe it! Reading in kindergarten. So I have been working with Victor reading books off of the list and he is starting to read on his own. It is so amazing that as of Sept 1st, he could not read, and now 2 months later, he is sounding out words and reading step one books!

Well, this got so long, I guess that's what happens when you don't update often. Talk to you all soon!

Love and Prayers,
Apryle

Friday, October 22, 2004 9:59 PM CDT

Hello Everyone and thanks for checking back in on Victor. He had his thrid chemo treatment for Long Term Maintenance on Thursday. Here is what his counts looked like:

wbc~1600
anc~700
plts~64,000
hgb~11.6

Again, his platelets fell. The rest of his counts are considered normal for where he is in his protocol, it is just those darn platelets giving him trouble. So for now he is going to be off of his oral chemo that he takes every night. He did get his IV push of vincristine at the clinic and he will continue on with the five day pulse of steroids, those two drugs should not cause a fall in blood counts. If anything, the prednisone will cause his counts to increase. He will go back to the clinic on Thursday to check counts and also to do a blood test to see if he is positive for an enzyme that can cause your body not to be able to tolerate the full dosage of some of the chemotherapy drugs (mtx and 6mp). The results from that test take about one week to get back, so I will let you all know when we find out. But for now the cause of the falling platelets is drug sensitivity. The NP at the clinic does not feel that there is anything suspecious going on, I will take that with a grain of salt!

Everything else is going good here at home. Victor and Nick are both going to be Spiderman for halloween. Victor's halloween party at school is on Friday the 29th. And then on halloween, we are going to the Make-A-Wish halloween party at the Raddison Hotel in Monroeville. It is from 12-3. Friends of ours who have gone in the past say it is such a great party, so we are really excited about going!

Nicholas is not feeling good tonight. He decided to spike a fever of 102. He does sound a little bit stuffy, so something is brrewing! It was only a matter of time before one of the kids got sick. We have been very lucky for the past year and a half that the boys have been able to avoid any illnesses. But now that they are interacting more with other kids, it was bound to happen. Fingers crossed that this doesn't spread to Victor.

Once again I want to remind you all how important it is to donate blood. I will be going back to donate in Nov. Please, please donate if you can. Also, you can donate just platelets!

Thanks to all of our awesome supporters out there who help us get through these tough times.
Love and prayers,
Apryle

Monday, October 18, 2004 1:57 PM CDT

Let me start off by thanking everyone who helped Team Victory raise $5400 for the Light the Night walk. I would like to thank Lisa Yauger from creative memories for the awesome job she did with the scrapbook fundrasier. We were able to add $900 to our team's goal thanks to Lisa. I also want to thank Anthony Vargo from Bella Capelli school of styling for the generous contribution of $700! With the help of these two wonderful people, Team Victory was able to top our goal of $3000, almost doubling it at $5400!!!! I am so proud of all of my team members! Way to go Victory!!!! Victor has a great time at the walk! He was so proud to wear his red patient hero shirt. I let him wear the shirt to school that day and during circle time, his teacher asked him to tell the class the meaning of the shirt. Miss Wilkie told me that Victor wore his shirt with pride and dignity! He cannot wait for the walk next year!

Victor is going to start into his third month of maintenance this Thursday. He is doing pretty good but still having issues with lower platelet counts. Here is what his counts looked like last week:

anc~1200
wbc~2300
hgb~11.9
plts~81,000

The NP at the clinic isn't too concerned with the low platelets, but I am! It's just that it freaks me out to see bruises on him. And I thought that during maintenance that his platelets would recover to a higher number and I would not have to have that sickening feeling in my stomach everytime I see a bruise! But I was so wrong and the feeling is worse than it was when he was on higher doses of chemo. I think that I was just expecting numbers to increase right away! NOT, not with Victor. He is just sensitive to any chemo high or low dose when it comes to his platelets. But I am trying to enjoy this new page in our book as much as possible.

I will post again after Victor's clinic visit Thursday!
Love, Apryle

Wednesday, September 29, 2004 9:21 AM CDT

Hello All!

It has been a while since my last update, but things have been crazy around here! Victor is doing just fine, but we got water in out gameroom when Ivan came to Pgh, and our carpet and funiture had to be moved out of the room for about a week until we could get someone in to clean and sanitize! We are now getting back to normal and the kids are going to get their playroom back. And I am going to get my computer back, boy did I miss this thing! Believe me, I am not complaining because it could have been alot worse, I think of those families that lost everything and I just want to cry.

Victor is doing great in school. He is adjusting just fine! He got his second treatment in LTM last week and his counts were good still:

wbc: 3400
anc: 2100
plts: 92,000
hgb: 11.6

His platelets are on the low side, but the onc did not see a problem, in fact, we all know how sensitive Victor's platelets are, and with only being two months into LTM, he has not built up a big enough reserve yet! All in all, things are going pretty good. The school has been great, and the nurse is wonderful there. She keeps me informed on all of the illnesses that are going around so that I can use my better judgement on whether or not to keep Victor home. So far he has not had to miss school because of anything contagious,

Remember the Light the Night Walk that is coming up on the 6th of October! Team Victory is doing great with fundraising and we are looking at an awesome total for this year! Also, we have the scrapbook fundraiser coming up on the 10th.

Thanks to all for the continued prayers and support!
Love, Apryle

Tuesday, September 14, 2004 5:33 AM CDT

WOW!

I feel sort of normal! Victor is doing just wonderful in school, things have been smooth so far. Well, all except for the fact that Victor got a stuffy nose after only 5 full days of school. And then Nichoals got it and then I got it. It feels kind of normal. I haven't had to deal with colds for over a year. Not that I am "glad" that we got colds, but looking at the big picture, at least it is something minor that doesn't require hospital stays!

Last week Victor had a two week check on his counts and they looked great:

wbc~7200
anc~4700
plats~114,000
hgb~10.6

All within a good range for just starting LTM. He will go back to the clinic on Thursday the 23rd for his next chemo treatment and spinal tap. I have lots of questions for Dr, W. One of which is re: physcial therapy for Victor. Now that I get to see him interact with other kids his age, I notice a definite weekness in his legs, especially with his ankles and his feet. He seems to be walking, running on his toes. Almost like he has a club foot, or like bricks as shoes. He never really uses his heals, which causes him to be very clumsy and he is falling alot. Vincristine, one of the chemo's that he will continue to get over the next two years, is known to cause this. Also steriod use will cause muscle and joint pain. And that is another drug that he will get for the next two+ years.

Now onto Fundraising! In preperation for the Light the Night Walk, I have organized a "scrapbook fundraiser" along with Lisa Yauger, and the other members of Team Victory. Here are the details:

Why: To raise money for the Leukemia and Lymphoma Society in honor of Victor

When: Sunday October 10th, 2004

Time: 12 noon-8pm

Where: St. Regis Church in Trafford

Cost is $20 per guest, all of which will go to the Society. This includes snacks, beverages, dinner, door prizes, and the chance at some really get Chinese Auction items donated by Tastefully Simple, Creative Memories, Avon, A one hour full body massage and so on! (too many to list)

We would love to have you come and crop with us to help raise money for local patients dealing with a blood cancer. If you are interested, please contact me via e-mail or call. Please try to rsvp by Oct 3rd!

Thanks to all,
Apryle

Wednesday, September 1, 2004 8:14 PM CDT

Hello all and thanks again for checking in on Victor. Today was such a big day for him, he started kindergarten!!! He only had to go half of the day and I got to go with him. So tomorrow is going to be the real test, and not for him, but for me! I am going to drive and pick him up everyday, so I actually get to see him going into the school, walking through those HUGE doors, and then gone, gone until 3:25! Somehow I know that I will get through it, it's not like I am going to be alone, Nicholas is going to keep me very busy.

Victor has been feeling great. He has got a lot of his energy back, and is still the same social butterfly that he was before he got sick. We went to a Pre-K party on Monday and Victor got to meet up with some of the kids that were going to be in his class. It was like he never skipped a beat with them. It made me so happy to see him finally getting to enjoy his childhood.

I also had my meeting with the school and that went very well. They teacher had a copy of the letter that I had for all of the parents in Victor's class, already typed up and in the information packet today. I was very pleased about that. She also had the Purell on the counter and told all of the students and parents that they would be using it along with hand wipes, often during the day! Another bonus. The school also agreed to letting the child life specialist from the clinic come to class and do a presentation on what leukemia is. I am trying to arrange for that within the next two weeks.

Well I need to go get the school boy off to bed, I will update soon!

Love,
Apryle

Saturday, August 28, 2004 8:14 AM CDT

VICTOR HAS FINALLY MADE IT TO MAINTENANCE!!!!!!!!

Thank you all so very much for the prayers and the support to help our family get through this rough year of intensive chemotherapy! On Thursday, August 26th, Victor started maintenace which is a hugh advance forward for us. This means that we should have no more isolation, less visits to the clinic, higher platelets (which means no more screaming at Victor to stop running "your platelets are low"), higher ANC counts and most of all, Victor can start to be a kid again and do some of the normal things that 5 year olds do! Here is what his blood counts looked like:

wbc~1900
anc~930
plts~150,000
hgb~9.8

Now his chemo schedule is once a month to the clinic for IV vincristine, and IV pentamidine (his preventive antibiotic), spinal taps every two months, oral chemo at home for the next 2.5 years!!!!! All of which is lower dosage than he was getting for the past year. So far he is really not liking the pills, but like I said, we have 2.5 years to get some sort of system developed.

So September 1st is the very first day of school for Victor! Oh, I just cannot believe that he is going to be gone all day! But I am looking forward to having some one on one time with Nicholas. He has missed out on "mommy time" so this is going to be my chance to make up for lost time with him. I have a metting set up for Monday with the school nusrse, Victor's teacher, who is Miss Wilkie, and the principle. We are going to discuss all of Victor's medical concerns that need special attention and things that the school and the other parents need to be cautious of. I also made copies of all of the drug sheets so that the teacher and nurse will be aware of the side effects that chemo can cause for Victor. Mainly the steriod, this will be a time when extra attention will be needed for dicipline exceptions!

I will try to update more often, and will let you all know how we are adjusting to a somewhat normal life.
Apryle

Thursday, August 19, 2004 5:49 PM CDT

I guess it has been sometime since I last updated, sorry!!!! Things have been very busy around here, going to the park, movies, and getting everything ready for the first day of school! Yes, I know, my baby will be going to school!!!! He is thrilled about it! To me this is just the next step we have to take to get our lives back to a normal state and one more advance forward to getting better.

So, let me start with Victor's clinic apt from last week. On Thursday we went to the clinic to get his counts checked out ( remember that he had just got out of the hospital Sunday, with an ANC of 800) well, his counts had sky rocketed, and I really mean that!

wbc~24,000 ( all from the stimulation of neupogen)
anc~21,000
plats~109,000 ( so, so much better than the previous month of transfusions)
hgb~9.6

We left the clinic feeling over joyed that we were on our way to maintenance. So Dr. W set Victor up to start maintenance the following Thursday (which is today) In the mean time, Victor has been having a blast, going to the park everyday and building up his strength. Going to the movies to see Yu-Gi-Oh, (fun) and getting re-aquainted with his buddies. Well, that all came to a screatching hault today when we went back to the clinic this morning to start and found out that his ANC was way to low to start. It needed to be at least 750 and it was only 450!!! What a huge let down for him and us! We were planning to go to Idlewild park next week and we also were going to our first family picnic at my cousin Cindy's house. Victor was getting so excited about seeing his cousin's Casten and Haden who he has not seen in over a year! Here are what the rest of his counts looked like today:

wbc~1700
anc~450
hgb~9.4
plts~140,000

So as it looks, Victor is on the rebound, but just slow, as usual! We will go back to the clinic next Thursday with VERY high hopes for LTM! And that all will be fine for him to start school on Sept 1st. Keep, fingers, toes, legs, and whatever else you can cross, crossed!

As always, thank you all for the support, and please remmeber to say an extra prayer for Victor that his counts come back for maintenance next week.

Love, Apryle

Monday, August 9, 2004 9:39 PM CDT

Hello everyone! Thanks for stopping by to see how things are going for Victor. We are all so glad to finally be home and sleeping in our own beds! I guess it was around 8:00pm last night that we got home. The doctor wanted to keep Victor into the evening to monitor his temp just because he was a bit on the higher side the night before and the policy is fever free for 24 hours before discharge. But we got here and all is well for now! Nothing showed up on any of the tests or cultures done. He had the first positive Staph infection that probably started all of this, but then also (probably) got some kind of virus on top of that and that is why he was having the low grade fevers after the culture came back negative! Another thought is that the temp could have been caused by the antibiotic's that Vic was on. Not a common side effect by the doctor said it can happen. Whatever, we are home, home sweet home!

I can honestly say that besides diagnosis, this has been the worst 4 weeks of leukemia. First with all of the platelet transfusion and then the persisting low grade fevers. It just took me right back to the day we got the bad news that Victor had leukemia. He had a temp while he was on an antibiotic's, I took him for blood work and BOOM! that was that. This time in the ER was like De Javu for me. I saw the blood running through Victor's line, and thought of the very first IV line that he had put in, I almost passed out. I had fear written all over my face and could not wait for his blood counts to come back. I was so relieved that his white blood count was low at 1,000. The number 110,000 will be etched in my mind forever and that is what I think I expected to see. But thank God, it was not.

He is on the road to recover and heading into Maintenance. His counts were good yesterday at:

wbc~2,500
anc~800
plts~68,000
hgb~8.6 (up from the day before)

He had a lot of monocytes which are the first of the white blood cells seen when the bone marrow is starting to recover!

So once he is fully recovered, it is on to being semi-normal again. The first thing that Victor wants to do is go to Idlewild Park! He loved that place when he was 3, that was the last time that we got to take him. And kindergarten is just around the cornor. I have mixed feelings about it. I really, really want him to attend, but worry so much about the communicable diesases that he can get that could be very harmful to a child who is on chemotherapy. But I am in the process of meeting with the teacher and nurse and principle(?) to discuss some of my concerns and also pass along a note to be sent home to all of the parents in his class about taking precautions to keep him safe.

Just a quick reminder that the blood drive in honor of Alex Lonero and Carter Finger will be this coming Monday at the Christian Life Church in Trafford PA from 1-7pm. Please please try to attend. All of the blood donated will go to the kids at CHP on 8 north, the oncology floor! I will be there at 5:45, I hope to see some familiar faces! You can contact Cheryl Renner at (724)864-0632 for more information.

Thanks for all of your support,
Apryle

Wednesday, August 4, 2004 2:29 PM CDT

Friday Aug 6th update!
Well, we are still inpatient and STILL febrile. I am very frustrated with this. None of the culture's are showing anything at all. So the doctor's are still thinking viral and that it is just going to take some time to run it's course because Victor is immune suppressed. There are talks of us getting out tomorrow, so we shall see how tonight goes without any antibiotic's. If the temp goes higher than it has been, then the thought is that it is something bacterial and not floating around the body, just dormant somewhere within causing the fever. And the antibiotic will need to be changed to something diferent. I will let you all know as soon as I find something more out!
Thanks,
Apryle
PS. Victor is so bored, he is climbing the walls here! He is on 9 south which is a medical floor ( not the oncology floor) and we will not let him leave the room to go to the play room up here! To many germs going around!


Just a quick update from CHOP, Victor is still here and running fevers. Other than that he is doing fine, a bit on the tired side and not really eating, but then again, who really wants to eat hospital food! So far all ot the tests are negative for any bacterial infections. The doctor's are now thinking that this is just something viral that needs to run its course. I hope!!!!!! Please continue to pray for Victor that these persisting fevers go away, so we can get on to business and into LTM.
Thanks.


Well, we got home from CHOP on Monday afternoon, and we are now BACK in the hospital for fever. Yesterday Victor's temp went back up to 101.5 and we took him back to the ER to get checked out. The oncologist admitted him and they are now doing a series of different tests to see if there is some other type of infection in his body.

A couple of things they are looking for are c-diff, it is in the intestines and can develope from the use of high dose antibiotic's. They also did a chest x-ray to rule out pnemonia and also a type of fungal infection that can settle in the lungs of immune suppressed people. So far, the x-ray is ok, the radialogist did say that he seen some streaking, but was going to take a closer look, it just may have been a poor quality film. Some of the other places for infection are also being checked out, his bladder, kidneys and of course, the medi-port. They did a perpherial blood drawl from Victor's arm to see if the infection is in the blood or just localized in the port. That could be the reason for the negative blood cultures but for the persisting fevers. I will keep posting as the results come in. Thanks for your support!

Again, I am going to encourage all of you to donate blood! On August 16th, between the hours of 1pm and 7pm, there is going to be a blood drive in honor of Alex Lonero, a little boy who passed away from nueroblastoma on June 6th. The blood is going to be put in another little boys name, Carter Finger, who also has nueroblastoma. The families would like for the blood to go to all of the patients on 8 north (the hem onc floor at CHOP). The drive will be held at Christian Life Church in Trafford, PA. From more information, please call Cheryl Renner at (724)864-0632. I will be there at 5:45 and I hope to see lots of familiar faces as well! Here are the CB site's for Alex and Carter, please stop by and give their families prayers and support! Thank you all!

www.caringbridge.com/pa/carterfinger
www.caringbridge.com/pa/alexp

Saturday, July 31, 2004 5:04 PM CDT

Good Weekend everyone! Well, not all that good! But at least we finally got some answers to the mysterious low grade fevers that Victor has been running for the last week!

On Thursday evening, his temp hit 101.5, and that is the magic number that automatically gets Victor admitted to CHOP. So we went to the ER and from there he was sent up to 8 north (the onc floor). Blood cultures were done and after 24 hours they are now positive for a bacterial infection in the blood. The same old bacteria, Staph, likes to frequent Victor's body! Well, GO AWAY STAPH, YOU ARE NOT WANTED!!!! OK, got that out! He is on IV antibiotic's and as long as the next couple of blood cultures are negative, Victor will be released Monday. He will come home on 10 days of IV antibiotic's which means no swimming! He is not to happy about that. So keep your fingers crossed that the cultures turn negative so that he gets out of that place!

He also got a red blood transfusion on Friday morning and tonight or tomorrow he is going to get another platelet transfusion! That will be 7 plts and 4 red blood for DI#2! But on the brighter side (if there acutally is one) Victor did show a rise in the ANC today. It went up from 12 on Thursday night to 220 today! And he got his very last treatment for DI#2!!!!!!!!!!!!!!! So now it is on to Long Term Maintenance as soon as all of his blood counts recover and we get over this hurdle. Radiation is also near, but I am now thinking that Victor's onc wants to delay it until his body adjusts to LTM. He mentioned something about 3 months into maintenance.

OK, again I want to encourage everyone who can to get out there and DONATE BLOOD. Over the past 2 weeks Vcitor has had a total of 11 transfusions and just think of all of the other children just like him who need to get frequent blood products! Save a life, and donate!

I will update as soon as I get the chance! Keep us in your prayers. Also some of our ALL KIDs friends who are also having a diffecult time:
Nicholas who is having mysterious seizuers,
John who just got dx with chicken pox, and that is potentally life-treatening
Keegan who also has chicken pox,
Cameron who has the same yucky staph bacteria in his blood as Victor,
Our good friend Ali who is recovering from back spasm's caused by her chemo,
Colin who got an ear infection and because of low blood counts, it turned into a nasty bacterial infection called PA,
Serena who is battling low grade fevers and my be looking at an inpatient stay, and Andrew who is dealing with terrible headaches and is visiting the ER to see what is going on.

Please say an extra special pray for all of our friend and their families as they are battling leukemia and the terrible side effects that come along with the beast!

Lots of love,
Apryle

Thursday, July 29, 2004 4:58 PM CDT

Oh has this been a crazy week with low platelets and low grade fevers. Monday started off with a bang! I took Victor to the clinic to get his platelet count checked because of all of the transfusion he had the week before, and I was not prepared for the results of the counts. His platelet count was down to 1,000. And remember that between 150,000 and 450,000 is a normal count. Of course when you are on high doses of chemotherapy you expect low counts, but not really that low. If Victor would fall, and get a cut, he would not have any clotting factors in his blood and that is potentially dangerous. So, again, he got another transfusion. Then on Tuesday he started to run the low grade fevers again, between 99.5 and 100.5. The magic number for an ER visit for any child on chemo is 101, and he did not get that high, but was darn near. We had and still do have our bags in the back of the van ready to go. I called the clinic to talk with Victor's Dr about the low grade fevers, and he assured me that what Victor is experieicing right now is just his lowest point from his chemo. I hope so because how much lower can a child go, 1,000 platelet count and 0 ANC! I took him back to the clinic on Wedensday, again, he needed platelts, this time, he did not drop that much, he went from his transfused number of 30,000 on Monday down to 19,000. So this time instead of only getting 3 units, his Doc ordered 5 units! We shall see Friday how they held up.

Now, today he started off with a low temp of 99.2, then later it was 99.7, then 100.6 and now it is 100.8, so we are very close to being admitted with fever and neutropenia. That means at least 48 hours in the hospital. He is sleeping right now and I am going to check his temp as soon as he wakes up. Please keep us in your prayers as we are going through this scary part of his treatment. If we get througth this, tomorrow will be his last intense treatment and then it is on to Long term maintenance for Victor! Wow, it has taken him so long to get here! I hope that we will be able to celebrate, he really wants to go to Kennywoood or Idlewild Park as soon as his counts recover! I promised him that we will. So as long as his counts are at a safe level before the end of the season, we are sooooooo there!!!!! Also, my cousin is getting married and she is having you "not so traditional" bridal shower with women, men and kids! I would love to be able to go with the kids so that the entire family can see them! It has been over a year since my family has seen my kids! And I know that they miss them so much! That is August 21st, so by then, lets keep all fingers crossed!

OK, I will update soon, and hopefully we will be able to dodge this hospital stay, but at this point that possibility is looking grim!
Thanks,
Apryle

Saturday, July 24, 2004 4:19 PM CDT

Hello Everyone and thank you all for the continued prayers and support! At such a harsh part of treatment, I am really feeling the need for them.

Thursday turned out to be the day from Hell for Victor and us as well. We got to the clinic for his scheduled apt. at 9:30 and lets just say, we didn't make it home until 10:30 the next day. It all started out with a bad port access. But before I get into all of that, let me just tell you that Victor's counts are way low. He had just got a platelet transfusion on Tuesday and he needed them again, they were 13,000. So, now back to the port, when his nurse put the needle in, she couldn't get a good blood return or she couldn't get the flush to go through. She was thinking that maybe there was a clot stuck in the needle, so she injected something called TPA into his line to dissolve the clot (if any). We had to wait one hour for the TPA to work, so when she checked it then, it was flushing but not without resistance, so she decided to just start his platelet transfusion and see what happened. Well, they would not go in! The only thing to do was to change the needle altogether, and Victor was not happy about that at all! In fact, he screamed so hard and loud that he broke every blood vessel in his cheeks ( and that is very easy to do with low platelets).

OK, the needle is changed, the platelets are running, Victor is playing video games,all is fine. After the platelets, he got his chemo that is a shot form, which he gets in both legs, he got them and on with the video games! Because of the risk of having an allergic reaction to the PEG shot, our clinic requires that we stay there for at least one hour after the shot is injected to be safe. So while we waited Victor said that he felt something dripping from his port, well I lifted up his shirt and the bandage was saturated with blood and it was leaking down his side. He had a nice big red spot on his shirt, which I didn't even notice, because he was wearing a red shirt! I called his nurse in, and she was amazed. She put some type of ointment on the spot that was bleeding (where the first needle was removed) and decided to do a post platelet count to see how much of a boost he got from the transfusion. In the mean time she looked at his legs where he got the shots and they were fine. By the time she got back with his counts, his legs were bleeding and so was the port area again. The counts revealed that he did not get a big enough boost from the transfusion, and that his HGB was down from 8.4 to 6.8 in just two hours! So now he needs more platelets and red blood, and this puts us inpatient for a shot stay on 8 north. Dr. Wollman also wanted to check the PT PTT levels of his blood, they have to do with the clotting factors and vitamin K in the body. So Victor got an infusion of vitamin K to help his blood clot. He also wanted to give IV fluids because Victor was dehydrated and vomitting! That is a first since induction! Oh yeah, just one more thing the test for PT PTT could not be drawn out of his port, so he had to get stuck with another needle in his arm! Poor Victor! He also needed to get his neupogen injection. So that puts him at 2 port needled, three leg pinches and one needle in the arm, all in one day, he was so upset by the end of the night! Daddy went to Toys r Us and got lots of presents for Victor!

In the morning we were told that his platelets were at 38,000 and HGB at 9.4 so Victor was clear to go home. But now that we are home, I am wondering how low he is again, he has already bled from an old cut that he had and his gums were bleeding a bit after he brushed his teeth. We go back to the clinic on Monday to get his counts checked, but if I start to notice more bleeding, we may be there sooner! Keep your fingers crossed!

Today Victor is just pooped out, he is sleeping and running a low grade fever, I hope it is nothing, but if it goes up we are ready with our bags packed. Lets hope not.

OK got to go get ready for dinner, I will post soon and keep you all updated on the platelet situation.
Apryle

Wednesday, July 21, 2004 6:53 AM CDT

Well, we made it throught two weeks of ara-c (knock on wood) without an inpatient stay! But Victor did need two red blood transfusions and two platelet transfusions. He has had them both in the past, but I would say that this is the most that he has had during a single treatment phase. But at least we know that his body is sensitive to the chemo, and that it is working at killing all of the bad cells, along with the good cells! On Monday night we started the neupogen injections, so we should start to see a rise in his white count along with the ANC. His counts yesterday were:

wbc~600
anc~300
plts~18,000(got transfused)
hgb~9.6

So on Thursday, Victor will go back to the clinic to get another IV chemo, Vincristine and a shot in the leg, which is also a form of chemo. After this week, he will have one more chemo treatment that is through his port, and then he will relax for two or so weeks until his blood counts recover! Then on to maintenance. Oh yeah, radiation is right around the cornor also. But his Dr. said that he will undergo that while his is in the beginning phase of maintenance. If you all are wondering what maintenance consists of I can just give you a brief rundown:

Victor will get one IV treatment a month, along with a spinal tap (one every two months, then skip a month). He will take lots of oral chemo pills at home. He takes 6mp every night for the next 2.5 years, 7 methotrexate pills every Monday night, and one week a month of decadron! So as it looks now, we will be buying stock in Sunny Delight so we can dilute all of the pills!!!!!! But the good thing is that his blood counts will remain in a safe range so that he will be able to be a "semi-normal" kid again, and I say that because, what normal kid do you know that has to take that many pills? He will go to school, be able to see his friends and family, but not without caution(of course). He will also be able to go to amusement parks, movie theaters, birthday parties, these are all things that for the past 14 months he has not been able to do. I CANNOT WAIT!!!!!

Thank you all again for helping us get through this past year, and we look forward to becoming a part of the inner circle again!
Love,
Apryle

Thursday, July 15, 2004 1:19 PM CDT

So we are now dealing with dangerously low blood counts! Victor went to the clinic today to start his last round of ara-c and low and behold, he had no ANC, that is right 0!!! His other counts are also very low:

wbc~300
plts~28,000
hgb~8.3
anc~0

This is what normal ranges are:
wbc~4,000-10,000
platelets~150,000-450,000
hgb~11>
anc~>1500

His doctor looked at his blood slide and said he saw no white cells at all! Kind of scary Ha? Well, this is where we start to be on fever alert! Also germ patrol. Constant hand washing, shoes off on the porch, limited visitors, lysol spray and wipes constantly on everything, checking temp often. A fever now is probably going to mean an automatic inpatient stay for at least 48 hours. I am hoping that does not happen, but is very likely. So please, everyone, say your prayers that Victor stays fever free while he finishes up with his final 3 doses of ara-c and his anc climbs to a decent level. At this point, I would be happy with 200!

Victor will go back to the clinic tomorrow for ara-c, and then he will do the short stay on Sat and Sun, when he will most likely need another red blood transfusion and also a platelet transfusion. His nurse cross and typed his blood today, so that should make the process a lot shorter in the hospital on Sat. Most of the waiting is for lab work to come back, and when the blood is typed you don't have to wait, just give the bracelet with his blood type, and then the nurses on 8north can order the blood.

Dr. Wollman also wants to start neupogen injections on Monday, until counts recover to a decent level, or should I say a safe level! Remember, those are the shots that Vic and I do here at home. They help to stimulate the growth of white blood cells so your body can protect you from any viruses or bacteria. And he is not anticipating any delays from here on out. So even if Victor ends up inpatient, he will still be able to receive his chemo. And that is just the closer we are to getting radiation out of the way and starting into Long Term Maintenance!

All the blood work talk aside, Victor is acting and feeling great! He is active and eating normal. He has been in the pool swimming everyday that the weather permits. He is now swimming without floatties, this is the boy who did not want to get in the pool the first day we got it! He just loves the pool and I do too! I don't know what we would be doing all summer if we had not got it! It is amazing how well he tolerates low counts.

On to Nicholas! He is now sleeping in a "big boy bed" and he is doing very well with it. He made a very nice transition from his crib to the bed. It was a lot easier than I thought it was going to be. I am still working on getting him potty trained, but I don't think he is ready. I don't want to push him, he will do it when he wants to.

I just wanted to mention to all of you who are able to donate blood, please, please do! Without donors, children like Victor do not have a chance of overcoming their illness! These transfusion that we are coming up on will be more than a handful for Victor! Can you imagine! And there are other kids out there just like him who will need several transfusions! So please give blood!

Again, thanks to all of you for showing us how much you care!
Love,
Apryle

Thursday, July 8, 2004 9:20 PM CDT

Hi,

Well things are going pretty smooth right now, Victor got to start into the second part of DI#2 and this time without any delay. His counts today were as follows:

wbc~2.4
anc~1050
plts~105,000
hgb~9.5

We got to the clinic at 8:30, started IV fluids in prep for cytoxan. Victor was NPO because of the LP that he was getting so he needed to get at least one hour of fluid before the cytoxan was administered. The NP came into the room to do the spinal tap, and I was not to thrilled about this, things seem to go much better when Dr. W does Victor's LP's, but what can you do when the doc is not there? Nothing, but hope that all goes smooth. Well, needless to say, the spinal tap was not as smooth as usual. It took three pokes and lots of blood for the NP to get the needle into the right spot. Victor also felt the needle, which never happens when the ONC does the procedure! He cried alot and asked me why he did not get the sleepy medicine this time. Makes me wonder what she did wrong. I questioned her about how much of the pain medication she gave him and her response was "the same as he usually gets". Something was different. But on the brighter side of things, todays start of chemo means 4 more weeks before maintenance!!!!! WOW, it has been over a year, we are so ready for a break!

Tomorrow morning I will bring Victor back to the clinic to get another dose of ara-c, this will be the 2nd of 4. Because of the days that treatment falls on this week, will we need to go to the hospital and be admitted for a short stay on Sat and Sun to get the last two ara-c infusions! No big deal, to me, it is better than Victor having to stay accessed for the full four days! Also, we are trying this to prevent another bacteria infection in his port. I hope it works!!!!!!

On another note, we had a couple of exciting things happen right here in our own yard today!! Just when you think something was a thing of the past, BAM, it shows up again. The kids were outside with dad and I was in the kitchen when I heard the music playing of an ice cream truck!!! I started yelling to the kids (I reverted back to my childhood days) "the ice cream truck is here, the ice cream truck guys" We were all so excited! I even got out my camera and took pictures of them by the truck holding their ice cream. I asked the driver if she could start to frequent our street and she was more that happy to! The next cool thing that happened was a hot air balloon flew right above us! It was so close that we could see people in it. Gramma Audrey was here and we all jumped in her car to chase the balloon! OK, dumb idea, it was just way too fast for us to keep up with, but it ws such a neat thing to see!

After all of the excitement, I took the boys on the front porch to give them buzz cuts. Victor had started to loose his hair again so I knew that I needed to cut off all of the long pieces, so I decides to shave it. Well, for the first time in a year of chemothreapy, he looked in the mirror and started to cry that he was bald AGAIN! I never thought that it would bother him, but I guess it is harder to swallow for him the second time around. I know it is for me. For some reason, the hair loss seems much worse this time. He is loosing his eyebrows and lashes, he did not lose them before. His legs and arms are as smooth as can be! He really looks like a sick child right now! That is why this is the hardest part of treatment for me, to see my baby like this is like cancer saying " look what I can do" ! I hate you cancer!!!! But to make things easier on Victor, Nicholas got a buzz cut too! Did he sit still? Of course not, so it is pretty crooked and some long strand here and ther, but who cares, he is two and I am not looking into sending him to any beauty contests in the near futuer, In fact, he probably will not be going anywhere untill DI#2 is done!

Well thanks again to all of you great folks who got our back as we head into the home stretch of this mess,

Lots of love and prayers,
Apryle

Thursday, July 1, 2004 8:48 PM CDT

Today was one of those, "I don't know if I am coming or going" kind of days! It started off OK. I got up at my usual 7 am, with Victor right in my face asking for food! So I fixed him 2 waffles, and then got myself a cup of coffee. I sat down, he was still hungry. So I gave him some left over pizza from the night before. He finished that! I still did not finish my coffee! But , whatever, when hunger strikes, I move, in order to avoid a "big one". Then Nicholas got up, I still did not finish my coffee, so at this point, I am starting to get grumpy. I got him out of the crib and out the front door he went. OK, I have been saying for the last month that I want to get a chain lock on the doors because Nick can open and unlock ALL of the doors in and out of the house. I chased him around the yard, mind you, still in my nighty, with workers working on my street. I, Yes, was screaming at him! These guys probably were about to call the phsyco ward on me!!!! No kidding, it was that bad. I finally sucked my single cup of cold coffee down and attempted to put on my "WAR PAINT", when I realized that Nick was outside again! UGH!!!!! I ran out, got him inside the house and dragged my desk in front of the front door so he could not get out. Then left for the clinic.

This is where my day got kind of weird! I turned on the radio and a song by Tim McGraw was coming on the radio. The DJ was just saying " Live like you were dying" and before the music started, the tears started to roll down my cheeks. I listened to the song and took in all of the words, but not without looking in the rear view mirror at Victor who has been feeling lousey! He is so puffy in his face and tummy that it is starting to get hard for him to breath, he sorta gasps when he takes a big breath in. His back has been killing him from the neupogen injections that he has been getting since Monday. Or maybe it is the decadron that he just finished up with after taking for 7 days in a row, 3 times a day! Both of these drugs can cause joint and bone pain. He has not been sleeping good at all, just restless from the steriod and also he cannot get comfy because of his back hurting. So, I just kept looking at him and crying, the words to this song FIT. That is what we have been doing for the past year, living as if our life could change at any minute, and it could! If you ever get the chance to listen to this song, please do, it might help you all understand how it feels to be a statistic!

At the clinic, Victor got his blood counts checked and WOW! Has the neupogen helped to bring up his wbc and anc. In just three days, his anc went from 400 to 4,000. So he only has to do one more day of the shots! Not 12 days. Dr. Wollman did not expect Victor to respond so well to the neupogen, it took him a good week to recover the last time he was on it! But we are all happy! YEAH!!! The rest of his counts are also good!

anc~4,000
wbc~7,000
plts~171,000
hgb~11.7

So if they hold steady, he will start his ara-c rounds right on schedule July 8th! Keep your fingers crossed!

Thanks for letting me vent! It feels so good to get this crap off of my chest and to people that I know are here to listen. Good Night, and Happy 4th of July to all of my wonderful friend and family!
Love, Apryle

Monday, June 28, 2004 8:39 PM CDT

Well, we finally hit the low count period. Victor had an anc of only 400 today. He left the clinic wearing "the mask" which he has not had to do in the longest time. Dr. Wollman has started him back on neupogen injections to help his anc and wbc grow! We will have to administer the shot here at home and that is no fun for us! Victor does very well with it though. He knows that with the magic emla cream that it is not going to hurt. But by the end of the 12 days, he is going to be so bruised up from all of the shots, his legs are going to be sore and he will not be a happy camper then. The rest of his counts were good:

plts~148,000
hgb~10.4

So the germ alert is on. We will pretty much be isolated to our house and our own backyard. It is a good thing that we got the swimming pool, this is going to give Victor and Nicholas something to do during this period of isolation. Now we are spraying everything in the house (including Nick) with lysol (just kidding). Wiping everything down with clorox cleaner and washing hands constantly. Not that we ever stoped, but we go into full force when Victor is neutropenic! I know all of you CK mom's out there know what I am talking about!

Well, keep Victor in your thoughts as he keeps chugging right along, trying to get the the end of this long, dark tunnel. At this point, I CAN see the light! Just 4 more weeks of intense treatments and we will be on our way to a somewhat normal life again!

Lots of Love and Hugs,
Apryle

Saturday, June 26, 2004 7:34 PM CDT

Hi Everyone,

I hope that you all are enjoying the summer. We are trying to and so far, things have not been too bad.

Victor was to the clinic on Thursday for his last dose of doxo, hopefully forever! He also started on another 7 day pulse of decadron, that is the steriod from hell! And the effects are very extreme for Victor. He is eating like crazy and he is also very, very moody. His face and belly are getting very puffy, but he has not gained too much weight this time around. I think it is because he has been very active and when he was on the steriod last time, it was right in the middle of winter and all he was doing was sitting in front of the tv or the computer and eating! Even if he does put on some wieght, he will take it off once he is done with the steriod. His count were still good:

wbc~1700
anc~900
plts~157,000
hgb~10.2

Of course they have dropped from last week, but they are still very good for being three weeks into treatment. Dr. Wollman feels that they will come up a bit more while he is on this pulse of decadron and then he will come done hard! But we are ready!

His activity level is down quite a bit today. His buddy Tyler came over to play, and Victor just could not keep up with him. In fact, we had to come inside and put the video games on so that he could take a rest. He does seem a little more pale that usual, so he hgb may have come down since Thurs. We are going to the clinic on Monday to get a count check again, so we will know for sure then.

Well, please keep Victor in your prayers as he finishes up this harsh part of his therapy. And leave him an encouraging message in his guestbook, I try to read the entries to him and let him know that so many people out there care about him. Again, thank you all so much for being there for us!

Love, Apryle

Tuesday, June 22, 2004 9:22 PM CDT

Wow! Victor is feeling great, this all seems just way too good to be true! He is now into his third week of DI#2 and he is feeling wonderful. In fact, he has had so much enegry, that I just cannot keep up with him. I know that it is all going to end soon when he gets the evil med ara-c, so I am trying to enjoy every minute of him right now. Also we have been trying to get out and about with him, and do some of the activities that he missed out on last summer. He got to go to the Zoo for the first time in way over a year. He had so much fun. We visited all of the outside exibits, and of course avoided all of the inside ones. He was fine with that! He has been in the pool swimming like a fish for the past two days. He did not know how to swim up until 2 days ago, now he is ready for the summer olympics, jumping off of the deck and spinning in mid air! Talk about giving your mom a heartattack! Sheesh!!!! On father's day, we went to Auntie's house for a picnic, he had so much fun playing with his cousins. I get tears in my eyes thinking of all of the fun that he is having, and hope that he can and will continue to be in good spirits throught part two of DI. I pray every night that he gets all out of his little life that a five year old child could ever want. I try to give it to him, without spoiling him. Hard, but we try!

Well, I will post on Thursday after the clinic visit! Thanks for checking in on Victor and for all of the prayers going up for him!
Lots of love,
Apryle

Thursday, June 17, 2004 8:56 PM CDT

Seven full days of decadron and we are now in full force steriod mode!!!!! And what a mode it is. Today was a scheduled clinic visit with Dr. Wollman. Victor got his counts checked and they were all very good, in fact on the high side, but that is a common side effect from being on a steriod. Here is a list of the counts for today:
wbc~7,000
anc~6,000 (with 90%polys)
plts~300,000 (the highest since dx)
hgb~11.7
Again, all very common for where Victor is in his regimine. He got his two IV chemo's today, doxo and vincristine. He is acting and feeling good. No real side effects from the drugs yet (knock on wood)! He will go back to the clinic next Thrusday for his last dose of doxo, hopefully forever, and also vincristine. He will also go back on the decadron for seven more days. He will have a slight recovery period before he starts the reconsolidation part of DI#2. This is when the ara-c starts. He have tried to convince Victor's onc, that we want him to get the shot form of the ara-c, but he feels that it is more important for him to get the IV. He is not 100% sure of the effectiveness of the shot verses the IV. He has opted to compromise with us on this, though. Instead of leaving Victor's port accessed for the full four days, he said that we could come to the clinic everyday (for the 4 doses of ara-c) be accessed, have the drug administered by the nurse, be deaccessed, and then go home. Repeat for 3 days. I am OK with that. It will be a pain going to Oakland everyday, but I really feel that we may be able to avoid another port infection with this round of ara-c. I was hoping for the shot and let that be that, but when it comes down to effectiveness, I am not the expert here!

So here goes the funny steriod stories. All that is on Victor's mind is food, "mommy, I'm hungry" 30 times a day. " OK son, what do you want"? " Whatever you have". And he really means it. Food is not a want at this point, it is a NEED. Here is what this 50lb, five year old ate today: 3 scrambled eggs with melted cheese and two slices of toast, a cup of hot cocoa. Then it was onto slices of cheese and pepperoni. From there he had 2 full slices of pizza. We went to the movies this evening to see Garfield and he had a large popcorn. During the movie, he talked about food, food, food! And it didn't help any that Garfield loved food, especially Lasagna. We left the theater and Aunt Shari drove to the Village Inn to get, guess what? Yep, lasagna for Victor! He ate a huge piece right before he went to sleep. I am quite sure that he is going to be waking me up around 4am, "mommy, I'm hungry" , "What do you want son"?, "Whatever you got". So, I guess I am going to rest now, I will be in the kitchen bright and early cooking up who knows what!
Love and lots of prayers,
Apryle

Ps. Many, many thanks to all of you out there who helped out with the golf outing on June 13th. Again, the support was amazing. We are truly grateful to have so many friends and family members behind us during the battle with leukemia!

Sunday, June 13, 2004 9:58 PM CDT

Wow, what a fun filled weekend we had!!!!! I think we did more this past week than we did in the past year. Like I said before, we are trying to get in some fun before the affects of DI kick in. So lets see, Friday evening Tyler came back over to play with Victor. They had a blast, even though I did notice that Victor seemed more tired than usual. We got up Sat. morning and surprised Victor and Nicholas with a trip to the Penn Hills VFD #5. It was so awesome. I have not seen my boys this excited in so long. We got to take a nice long ride on the fire truck and tour all around the station. Some of the highlights of the trip were when Victor got to put on one of the real firemans hats and when Nick was standing next to the tire of the fire truck, Andy, our neighbor, pointed out that is was bigger than Nick! Victor was thrilled to get to ride in the front seat of the truck. When we got home, Victor tuckered out for 3 hours in my bed. He was so full of emotion, that he was all pooped out from the trip!

Today, we went on a boat ride with our neighbors and good friends, Andy and MJ! They keep their boat docked at a Marina on the Allegheny river. We took the boys and spent the day on the boat. They took us from Verona to the city, right to the Point, where the three rivers meet. We all had a great time, although, it is very hard to contain a 2 year old on a boat! Victor was great with the whole thing. He loved the cabin underneath, and of course that he could watch a DVD too! We all got home and again, pooped out!

Now we will start to really limit what we do, with chemo being in almost a week, we expect counts to start to fall soon. But at least we got to do some really cool things this week with Victor! He will go to the clinic tomorrow for a peg shot and to see what his counts are. I will put a post up this week to let you all know how he is tolerating DI. Also, click on the quilts of love link below to see Victor's quilt, he just got it today, thanks to the wonderful angels at Quilts of Love!
Love, Apryle

Ps..If you have not already done so, please take the time to visit the link below and sign the petition to get a childhood cancer stamp approved, which will raise money for the research of childhood cancers!

Friday, June 11, 2004 9:49 PM CDT

Hello everyone!

First, thanks to all of those who have taken the time to leave such encouraging messages in Victor's guestbook, they really do mean a lot to him. As we hit the one year mark, it is so nice to see that we are still being supported by all of our wonderful friends and family, and now our new "computer friends."

Victor went to the clinic on Thursday to start the final intense phase of treatment,Delayed Intensifacitation #2. His counts were all good enough for him to start, and this is the first time since he was dx that he will not have a delay in between treatment phases. Here is where his counts are for now:
wbc~2.3
anc~1300
plts~133,000
hgb~9.8

All pretty good for a child who is on chemotherapy. So he got IV vincristine, doxo, and a spinal tap with methotrexate, he also started a 7 day pulse of decadron, which is a harsh form of a steriod. We will start to notice lots of changes in Victor over the next week because of the many side effects of the steriod and chemo. The first thing that we will see is a hugh increase in his eating. He gets weird cravings and wants to eat all (and I mean ALL) of the time. He will also become really puffy in his face and his belly. His hair will start to come out again. For some reason, this is one of the hardest things for me. You all are probably thinking "it's only hair", which is true, but it is hard to deny what he is going through when you see a bald five year old standing in front of you! Not that I even try to deny it, but for one or two seconds throughout the day I do try not to think about cancer, see what I mean. His hair is so nice right now and it is going to be sad to see it go again! It doesn't bother him at all, in fact, he doesn't think that he is bald, just that his hair got blonde!

All is going good on the home front. Although, we are still waiting for the pool to be installed. Vic went and picked the pool up last week but the installers are so busy, and with all of the rain that we had last week, they are very far behind schedule. So as of right now, if it doesn't rain over the weekend, our pool will be in on Tuesday. They kids are so excited and cannot wait. With the decent ANC count, we are able to get Victor out to do more. I took him to the movies to see Shrek 2, he went mini golfing with daddy and Nick one evening, while I stayed home and enjoyed my house all to myself, something that NEVER happens. He has also had his good buddy Tyler over to play a couple of times. And we went to eat again, inside, which is such a big deal to him, because we always have to take it home when his counts are to low. Tomorrow morning, we are taking him to Penn Hills FD to ride on the fire trucks and tour the station. He doesn't know yet, so he is going to be so surprised! I'll let you all know how it goes! We are trying to get a lot of fun things in for him before his counts are low, probably in about a week or two!

Well, Master Victor is ready for bed, and of course, mommy needs to go to bed when he does, or he can't get to sleep! I will post again soon. Thanks to all!
Love, Apryle

Saturday, June 5, 2004 1:12 PM CDT

One year ago today, we found out that our son Victor Thomas, had ALL (acute lymbhoblastic leukemia). As I sit here and think back on what our family has been through this past year, I remember all of those who have been there to support us in one way or another. For all of the neighbors who prepared meals for us during those first few months of long clinic visits, for friends and family members who sent gifts and cards to put a smile on Victor's face, to those who help raise a generous amount of money for Victor's medical fund, and for our parents and sisters and brothers who have been there for us every step of the way to help in whatever way we could possibly need help. I will never be able to express how thankful we are for the support that we have had to help us get through this past year.

I remember the day like it was yesterday, I took Victor for blood work because he just was not getting better after being treated on antibiotics for a sinus infection. I got home and listened to the message on the answering machine, it was Victor's ped. calling to tell me that the results of the blood work did not look good. I called him back and these next few words will be forever etched in my memory "your son has leukemia" time stood still, our life changed in an instant, from that one phone call. The events just continued to unfold like a nightmare and for sometime, I just kept telling myself that I am going to wake up and this never happened. But, unfortunatley, it was true and has been a part of our life for the past year. But instead of grieving, we celebrate Victor being a ONE YEAR cancer survivor today! Please look back at my April 15th journal entry for a full discription of Victor's diagnoses story! And also, please take the time to leave Victor a message congratulating him an overcoming one of the hardest things a child should ever have to go throught! He is my hero and I am so proud to be his mom!

Thursday, June 3, 2004 8:52 PM CDT

Hi to everyone,

I wanted to first tell everyone Happy Memorial Day! Hope you all had a great holiday weekend.

Well, we got the pool, but are waiting for instalitation, and who knows when that is going to be. The women that I spoke with said that she would try to put a rush in for us, but if it rained then that would cause more of a delay. And wouldn't you know it, it rain almost everyday last week! Oh well, maybe by the end of June! Victor is so thrilled and askes everyday when those people are going to put up his new pool!

Today we took Victor to the clinic for a blood count. He is on the rebound and should start DI#2 by next Thursday. Here are a list of his labs from today:
wbc~2.2
hgb~9.1(down a little, but still being produced)
anc~600 (with lots of monos 7.0)
plts 136,000
I am pleased with all of his counts and really feel that coming off of bactrim has help him alot. Normally, we would be lucky if he had an ANC over 500, and any monos at all. And this will be the first time that he will start a new treatment phase on time! Thank you pentamidine!

This was our last visit at the old clinic, starting June 7th, all apts will be in the new office in CHOP. That place was total confusion today. Stuff everywhere. And I heard that the new clinic is small and doesn't have a play area in the waiting room! Not a good thing for a pediatric clinic! Oh well, not much that we can do about it. We are lucky to have such a great staff of doctor's and nurses caring for our children!

I am sitting here at the computer and happened to look up at the hermit crabs and one of them came completely out of it's shell! Oh my, what happens if this thing dies! How am I going to explain this? The girl at the pet store told me that if they come out of their shell and do not find another shell fast enough, that they will die! I put the other shell real close to it. I hope he makes it.

It is bed time and the "Master of the House" (aka Victor) is demanding that I turn off the computer and take him to bed. So, goodnight and I will post soon!
Lots of Love,
Apryle
PS. pray that the crab makes it! Victor will be crushed if it doesn't

Tuesday, May 25, 2004 9:33 PM CDT

Hello everyone and thanks for checking in on us. Victor has been Victor for the past week. Driving us nuts and usual!!! (in a good kind of way) The latest thing is the fighting with Nicholas about everything. This is a hard thing to deal with because Nick does agaitate Victor, no matter what he is doing, but he IS only 2 and still doen't realize that big brother needs his space. So when a big one breaks out, I seperate them but putting them in their rooms. It doesn't work. Nick comes out and starts up right away. He is too young to understand punishmnet yet. I will overcome this! (yeah right)!

Today was Victor's 40th day of Interim Maintenance #2 and also the last day of treatments for 16 days! He did very well with his spinal tap and Dr. Wollman said his fluids look very clear! (thank you God) It is amazing to me how well he handled the tap today, he didn't move an inch or cry once! I am very proud of him. His counts are decent, but not good enough again for the IV methotrexate. His platelets did recover to 133,000, but his wbc and ANC were a bit too low (1700 and 600). His hgb went up a tad bit to 10.2, so he did get vincristine. Today's visit was very long, after the Lp and chemo, Victor got IV pentamidine which runs over one hour! So we were at the clinic from 1~5, very long day.

A couple of days ago we noticed that Victor had a red bump on the front of his thigh, it looked like a little pimple or a bug bit to us. We asked Dr. Wollman to take a look at it today and he said it looked to him like an infected bug bite. He put Victor on an oral antibiotic for the next seven days (4 times a day) wish me luck! When we got home, I noticed another bump, this time on the back of the same thigh. I am worried now that it is something more than a bug bite and am going to call the clinic first thing in the morning to check this out. I did ask the doc if he thought it was chicken pox and he assured me it was not! keep prayers coming that it is not, as chicken pox can be very dangerous for a child on chemotherapy.

On another note, I just wanted to thank the Ruggiero family and everyone else who is participating in this years golf outing. For those of you who don't know, the outing will take place this year on June 13th at 1:00pm at Meadowink Golf Course. Again, the response of our community and friends and family is overwhelming, and will never be expressed into the right words, we are so grateful for all of you and the support you have given to us this past year. And as we approach the June 5th mark, I remember each and everyone of you, how have been there for us in one way or another. Thank you all for the bottom of my heart and soul!

Love, Apryle

Wednesday, May 19, 2004 9:30 PM CDT

Hello to all,

Things are going really good for Victor right now. He is full of enegry and feeling pretty good. We have been spending lots of time outdoors, playing and getting ready for our new swimming pool! That's right, we have decided to get the boys an above ground swimming pool so they don't go out of their minds with boredome this summer. We made the final purchase yesterday at Pool City. We have a pretty big backyard, so we went with a 24' round, really though, it's a man "thing" bigger is better, I would have been fine with any size as long as the kids liked it! So hopefully we will have it installed soon, they are backed up right now 2-3 weeks, My aunt, who sold us the pool, said she would try to put a rush on the installer! We are all excited! I will post pictures as soon as we get it!

The hermit crabs are doing good, but Victor is not a very good "pet owner", I feed them, give them water, and remind him that he needs to take them out of the cage every now and again to play! I'm glad we didn't go for a more involved pet! I do try to get him to take a little bit more responsibility for them, and sometimes he does and other times he just doesn't. I think it is his age, and he will do better with a pet when he is older.


Well, that is all for now, but I will try to update soon!
God bless you all for all of the support!
Love,Apryle

Friday, May 14, 2004 7:26 AM CDT

Hey everyone,

Well, aside from the temper tantrums, the back talking, the fighting about, well just about everything, all is well here and "so called normal" at the Flinko house!

Victor went to the clinic yesterday for chemo and a check-up. Again, his platelet count was too low for the methotrexate (52,000) his anc was 700 and HGB dropped a bit to 9.8, but this is all to be expected given the chemotherapy. He did get vincristine, a chemo that doesn't drastically affect blood counts. His next apt is May 25th that will be day 40 of IM#2 and the last treatment for IM.

He is feeling pretty good these days, has tons of enegry and really wants to do THINGS, anyTHING. He is getting bored with this place, so he is very moody and flips at the drop of a hat. I try to make each day different for him, but I am running short on ideas for around the house fun! Feel free to send suggestions our way. This summer we will need all the help we can get keeping the kids entertained. With delayed intensification in the very near future, we will pretty much be isolated from the rest of the world, so any new ideas will help.

Once DI is through, Victor will undergo radiation for 10days and then he will start maintenance! Then maybe we will live a somewhat normal life!! If normal will ever be the same for us!!

So onto the Victor stories, lets see, where should I start! Oh, he is only five, right? Sometimes I need you all to point this out to me. Tell what five year old BOY argues with their mom about what they are going to wear everyday? From color of a shirt to zipper leg pants, to short socks to sweatpants that make him look FAT, can you beleive fat! I have given up with trying to make him look put together. If he wants to wear a purple shirt and orange pair of shorts, so be it! One less battle for me to try to win.

How do you get a child to keep those inappropiate thoughts to themselves, like he asked our neighbor, if you brush your teeth everynight then why are they still yellow? And he has a very bad habit of asking women if they have a baby in their stomach, even if they are 60 years old! I try to explain to him that it is ok to think about these things but it can hurt someones feeling if you say them outloud. He agrees with me and says he will keep to himself, but let him see a set of yellow teeth and the questions start flying! Maybe I made him obsessed with teeth and that is why he takes notice! I am always trying to figure that child out.

Well, enough is enough, the master is demanding hot fries (yes it is only 9:30 am but this is the latest food craving)so i need to run and get them before a big one breaks out. Please continue to keep us in your prayers and stop by every now and then to check in on our "so called life"

Love,
Apryle

Tuesday, May 4, 2004 10:00 PM CDT

Hello all,

Today was day 20 of Interim maintenence#2. Victor did not make the cut off numbers. His platelet count was too low to get the methotrexate that his protocol calls for. Remember I told you all how important this particular drug is for his high risk diagnoses and it will not be made up. So we will try for the 4th dose in 10 days(we are missing the 3rd)Other than the low platelets, everything else was good His HGB was 11.5, his ANC was 900 so we celebrated by going to lunch at subway(inside) he wanted a meatball sub. And then we headed over to the pet store to close the deal on our new pets. Victor is the proud owner of 2 hermit crabs, named after the Teenage Mutant Ninja Turtles, Leonardo and Michaelangelo. He really likes them and we are all happy with our final decission!

I have a funny story. For all of you who know Victor, we never know what is going to come out of his mouth next. Last week when Grandma Audrey was babysitting Victor he told her not to put milk on his cereal because he thought he might be Lactose Intolerant! Where did he get this one! Today at the clinic he asked Dr. Wollman to check him to see if he was lactose intolerant! I was rollin' on the floor! So was the Doc. The funny part about it all is that he actually knew what it meant. He must have seen a commercial for Lactid (my only reasoning for this one)!!! One thing that I learned throughout this process of battling leukemia is that through the eyes of my child, I can see the light at the end of the tunnel!

Thanks to you all for the concern and for your everlasting support. Check out Victor's album and sign into his guestbook.
Apryle

Saturday, May 1, 2004 9:01 PM CDT

Hello to all,

I cannot believe that it is May 1st already, this year past us right by! The weather was great today and the kids spent most of the day outdoors, again I could not get Nicholas in the house. He did very well with his surgery yesterday. The procedure took about 45 minutes fron start to finish and he was only in the recovery room for a brief time. He does seem to be very tender in the area of concern, but is handling it just fine. I gave him some yummy blue raspberry Advil and he went to sleep fine. Thanks to everyone for sending prayers for Nick!

Victor is doing good, for the most part. He is not as irritable as he was during the week. He helped daddy build the shed today and felt like such a big boy. I was so proud of him. His enegery level is great right now, which means that his HGB is probably holding steady for us. He does seem to be bruising a lot. But they are fading as the days pass. His appetite is still very good, I feel like I am always in the kitchen fixing him something. He eats very healthy, salads, carrot sticks, loves steaks and baked potatoes, so I do not worry about weight gain, I let him eat whatever he wants, I am thankfull that he is eating good.

He will go to the clinic for his 3rd dose of escalating mtx. His platelet count was only 57,000 on Wed, so we are praying that they recover enough to get it on Tuesday! Lets all keep our fingers crossed that his counts are OK on Tues.

We are still debating the pet issue, I really think it is going to be (drum roll..........................) a hermitt crab! I told him to let me talk to Dr. Wollman on Tuesday and see what he thinks.

Thanks and remember to sign in Victor's guestbook!
Love and prayers,
Apryle

Wednesday, April 28, 2004 7:58 PM CDT

Hello All,

I am exhausted today. For some odd reason, Victor was up at 5:45am and really up, asking for breakfast etc.. He did not take a nap at all today and is still at it as we speak! He is also very irritable with just about everyone and everything that he comes into comtact with, so keeping my cool with him today was a real challenge. I will try to go to sleep early tonight!

We did got to the clinic this morning for counts and also to get the first dose of IV pentamidine, it went very well, but long, one hour. I asked the NP about the adverse side effects again, and she reassured me that they are very rare. She printed out a fact sheet for me so that I will have it on hand if anything should arise. I asked about the inhaler verses the IV, and CHOP preferres to do the IV over inhaler, no real reason, just because they feel it is easier for the smaller children to handle. As for counts, all is decent except platelets at only 57,000. We are hoping for a slight increase for next weeks scheduled dose of esclating mtx (75,000). HGB was steady from last week at 10.9, wbc was 1.8 and anc was 700 (which in the case of being high enough for chemo, the lab would do a mannual count and surely find 50 cells,) they have done it before when Victor was soooooo close to the cut off.

We are now thinking of getting a pet, not a big pet, something small. We thought about a lizard, so we stopped at the pet store and found out that they carry salmonella(OUT) Turtles, frogs, herrmitt crabs, all being considered. I could not do rodents of any kind, no dog just yet, when Nick is older, and no cat because of the litter box! Victor really wants something to take care of!
Any suggestions?

Nicholas will have his hernia surgery on Friday in the morning, please send prayers our way that all goes well for the little guy!

Also, check out Victor's photo album and sign in his guestbook, he likes for me to tell him everyone who checks in on him!

Thanks,
Apryle

Friday, April 23, 2004 8:32 PM CDT

Hi All,

Today Victor had his clinic apt. He was able to get his 2nd dose of methotrexate and vincristine. His platelets were 92,000 and his ANC was 900! Awesome for Victor, we are lucky if his ANC is 500, so we were very glad to see things going in the right direction for once. His esclating dose of mtx is not quite as high as it should be right now, but at least he was able to get it, and by lowering the total dosage amount, this will allow him to receive all 5 treatments. Instead of increasing each dose by 50ml, it is only being increased by 25ml.

Also, Victor's onc is taking him off of the Bactrim and replacing it with Pentamidine IV every 28 days. I still need to do some fact finding on this replacement, but the dr. assured us that it provides the same protection as the bactrim does. He chose to do this because of how Victor's counts are always so low. Victor is thrilled that he doesn't need to take any pills for now! We will go to the clinic next week for the first infusion on WED.

Overall, Victor is feeling fine. He has a great appetite right now, and has lots of enegery(hgb-10.8) He did start to get a little bit of diaherra, but it is not that bad. He normally doesn't get very sick from any of the meds but
ara-c.

Thanks again to all of our friends,
Apryle

Wednesday, April 21, 2004 9:38 PM CDT

Hello to all,

This week so far has been a very busy week for us. Nicholas had his consultation with the surgeon for his hernia, he will have the surgery done on April 30th, that is next Firday.

Victor had his evaluation done with the Child Development Unit. A baseline of his IQ was done in preparation for the upcoming radiation. We felt it was best to get an idea as to what his strengths and weeknesses are right now, this way we will be sure if any damage was done by the radiation. This is beneficial for us and also the future of radiation research.

So, on to what the doc had to say. Victor ranked on the higher end of high average and in some of the categories he was superior! (he gets his looks from his dad and his brains fron me) The evaluation is based on the Stanford Binet Intellegence Skills. Non verbal (puzzles, copying patterns), verbal (defining words, number reasoning tasks, classifing objects), academics ( letter recognition and sounds, identifing words), spelling, listening skills and visual motor skills, these are the testing catagories. Dr. Feldman told me that if Victor would have been paying more attention to her and what she was telling him instead of thinking way ahead of himself, that he would have scored even higher! I am one proud mama right now!!!!!!! She also recomended he attend the all day kindergarten program because he needs more of a challenge, and can use work on his listening skills( I knew that!).

Victor will go back to the clinic on Friday for his IV vincristine and methotrexate. His platelets need to hold at least at 75,000 to get the mtx. Please send extra prayers our way, I do not want him to miss out on the mtx, it is very valuable in his protocol and he only got 3 of the 5 doses in the first IM. If his counts are not high enough to get it, it will not be made up!

Thanks to all who have viewed Victor's page and to all of the great friends that we are making through the All-Kids list.

Love and Prayers,
Apryle

Thursday, April 15, 2004 7:54 PM CDT

Victor's Diagnoses Story

Like most children diagnosed with Acute Lymphoblastic Leukemia, Victor had all of the "text book" symptoms.

It all started On April 28th, 2003, I took him and his little brother Nicholas to the peds office because they both had a cough and Victor's eye's looked pink. Sure enough they both had streph throat and Victor had pink eye. They were both put on an antibiotic and started to improve in a couple of days.

Nicholas continued to be fine, but Victor never was quite the same. The cough would come and go along with him being tired on somedays and fine others. He has always been a very active little boy, sometimes overactive, so when we noticed him sitting in the outfield during tee-ball practice, a red flag went up. He was never one to tire out up to this point. Then the bruising started toward the middle of may. He also started looking pale to us. But still, nothing that warrented a doctors visit. A couple of times he woke up in the middle of the night and would tell me that his leg hurt, but I would rub it and he fell right back to sleep. Then June 1st, Victor fell asleep in my bed and I let him stay all night, I snuggled close to him and he felt very sweaty. He was also warm, like he was getting a fever. The next morning when he woke up, I took his temp and it was 102. His eye's were also very puffy. I called the doctor and asked for him to be seen. We went in that afternoon(June 2nd) and I explained, again to the doctor about the tiredness, pale color and the bruising, I also told him about the leg pain. He still was not too concerned. He diagnosed Victor with a sinus infection and sent him home on an antibiotic.

He was on the antibiotic for 3 days when the fever returned, 102.4, I called the peds office and asked again
for them to see Victor, this time they sent us straight to Forbes Hospital for a sinus x-ray and blood work! Within an hour they knew that Victor had Leukemia. I wasn't home from the Hospital when the doctor called and left a message on the answering machine that something was really off with the blood work and Victor needed to get to Children's Hospital as soon as possible.

We got to the Hospital at 3:30 that afternoon, he was admitted to the E.R and IV lines inserted, more blood work drawn, doctor's and nurses in and out of the room. Then the ONC and a Fellow came in to tell us the results of the blood work done at CHOP. We were told that Victor had what looked to be Leukemia but they couldn't be 100% sure until a bone marrow aspirtation was done. So were went up to 8 north, the hem-onc floor, and cried the entire night long.

The next day the BMA was done, and the results were B-Cell Acute Lymphoblastic Leukemia. We were intoduced to Dr. Wollman, who is a truly amazing man, he is Victor's primary onc, he gave us the low down. Victor had a white blood count of 110,000, which put him in a high risk category. He needed a platelet transfusion right away, as his count was only 14,000. he gave us the roadmap for induction, and also the protocol that Victor would follow as long as he responded quickly to the first 7 days of induction therapy.

Well, Victor was a very slow responder, at diagnoses he had 100% blasts in his bone marrow. On the 7th day, he still had 72% remaining. So now the therapy changes a bit. He is on the 1961 augmented protocol for SER patients. This consists of induction, consoladation, Interim maintenance #1, delayed intensifacation #1, interim matienance #2, delayed intensifacition #2, 1800cgy of radiation therapy to the brain, and then 2 1/2 years of maintenance. Wow! Alot for a 5 year old to tolerate.

On the 29th day, another bone marrow aspiration was done to see if he was in remission, and he was! Thank you Lord!

He has just started into the 2nd interim maintenance, and is doing quite well, for the most part. He has not spent much time in the hospital,(2 times with a staph infection in the port), and only has delays because of low counts. He is very slow at recovering from a phase of therapy, so we do alot of waiting for his ANC to get high enough for him to go into the next phase of treatments. He is still very active and hardly is affected by the intense therapy that he gets. He is only upset from the ara-c that he gets over a four day period. I give him the zofran and he is back to normal within hours. He is my hero.

I forgot to mention that he did not have CNS involvment at dx. That is important, because people relate the radiation to CNS positive and he was not, his radiation is due to the fact that he responded so slow to the therapy.

Please continue to pray for Victor that he remains in remission and will one day be cured!

Thank you all,
Apryle

Wednesday, April 14, 2004 11:38 PM CDT

I am sorry that It took me so long to add an entry to this page, things have been kind of crazy around here with Easter just passing.

Victor had a clinic apt. on Tuesday and was finally able to start Interim Maintenance #2. For those of you who are just getting to know us, Victor's blood ocunts are very slow to recover from a round of chemo. We wait 3 to 4 weeks before he is able to start a new phase of therapy. We are hoping that there are no more delays because he is already 3 1/2 months off course. At first this really bothered me, I would get so upset when we would go to the clinic and his white count and ANC were too low to start treatments, but now I know that this is just the way his body handles all of these toxic medications. I would say for the most part that he is doing quite well with all of it!

So we now know that the radiation therapy is going to happen for sure. Victor's Dr. kept putting the issue off, but I never really let it go, I would ask him little questions each time we were at the clinic, this time he gave me some of the answers that I wanted. We know that the radiation is going to take place when Victor is through with his 2nd DI phase, which is sometime late in the summer. We also know that he is going to get 1800cgy over a 10 day period. Now I can get more info. on my own and present it to the Dr. when I have any concerns, but for now I am going to focus on the chemo!

Thank you all for your prayers and support.
Love,
Apryle

Sunday, April 4, 2004 10:02 PM CDT

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