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Friday, September 1, 2006 10:43 AM CDT

Happy Birthday Sweet Sophia Marie. We all love and miss you.

Love
mommy, daddy, and big sister Olivia

Added 10/10/2006

I would like to thank you all for following Sophia's progress. I think that ending this site with her Birthday wish is very appropriate. As I have mentioned in the past this site has been a tremndous help to me but it has also become a bit of a burdon. I no longer have the desire to update the page. Olivia and the rest of the familiy are doing well. Please continue to pray for all those that are battling cancer or any other illness.

Thank you all

Love and peace
Diane Olivia and Sweet Angel Sophia; may she forever rest in the loving hands of God and watch over our family, especially Olivia

Friday, August 25, 2006 11:04 PM CDT

Hi everyone,
You may notice that I changed the home photo. I replaced the photo of Sophia and Olivia with their friend Larry, who passed away 1 year and 1 month after Sophia, with a photo of one of my professors who has been riding the PMC for more than 5 years. The PMC is a 200 mile ride from Sturbridge MA to Provincetown MA, hence the name Pan Mass Challenge. Robert Daniels has been riding the PMC in memory of Sophia, as well as his sister and others, for 2 years. In the photo above he is holding a photo of Sophia that he carries to help inspire him to keep riding as he is interviewed by NECN reporters. I am honored to know such a kind man. Oh and by the way he gave me an A in his class, thank you.

Olivia starts school on Monday, she is very excited. Sophia's birthday is on Friday 9/01 she would be 6. She would be 6. That's all I have to say about everything but I think that is enough, don't you?

Love and peace,
Diane Olivia and Sophia

Tuesday, August 15, 2006 5:57 PM CDT

Hi everyone

It has been a long time since my last post and you all know why. We have been very busy; Camp Sunshine, York ME, MArtha's Vineyard, Canobee Lake Park, and a Cruise to the Virgin Islands. Olivia has had a wonderful summer.

4 Years ago yesterday we got the horrifying news about Sophia's cancer. I remeber everything about that day; saying goodbye to Olivia at Papa's house, the train ride into Boston, getting slightly lost looking for the hospital(taht I walked right by), getting bombarded by Childlife Specialists and volunteers upon our first steps through the clinic door (which was quite frightening because we know why they are sooo friendly. . . to eleviate the fear if that is at all possible), Dr Wolfe's speech given about his pre diagnosis " I don't even have to examine her, she has tumors here there and there and BLA BLA BLA, my shock at his comments (those who know me know that I knew it was going to be bad but never in my wildest dreams could I have immagined it could be that bad), having to call Sophia's dad to give him the news and begging him to be calm when he came to see her, the holding of the screaming kicking child while they try to place her IV and draw labs etc. I can go on and on.

I wondered why I suddenly had flashbacks last night when I tried to go to sleep, I have not had them in a while. I feel very sad today. 4 years ago yesterday I lost my baby and got back a sick child that I had to give up being mommy to and become nurse to, a position I would not have ever given up but still she was not mine anymore. All of the hopes and dreams I had for her and Olivia crashed, never was life to be the same again. I have to stop I am going to a place that I don't like to go.

Please pray for all the families with loved ones who are sick and battling for life. Always remember life for our family will never ever be the same, we have changed for ever.

I have more to say, happier things but it will have to wait until next time.
Love and Peace,
Diane Olivia and sweet angel Sophia

Friday, June 30, 2006 11:19 PM CDT

It has been a very long time since I last posted. I have said before it is difficult to not talk of Sophia, the whole reason behind the creation of this webpage. Olivia is doing awesome. She has been having fun with mom, so she says. We were at Camp Sunshine for their Bereavement weekend in May, Olivia had a blast. She got up again and sang in the Talent Show. I am so proud of her, she is so brave. It is always an emotional weekend. The balloon release resulted in alot of wet eyes, not from us, Olivia has yet to show any real sadness for the loss of her sister. I hope it is not my fault, I don't show her anything but happiness. I remingd her how wonderful our lives have been due to our knowing Sophia. She talks about her sister all the time.

At the last meeting for Olivia's group there was a small service to honor all the loved ones who have died. Olivia made me get up and read the Mass Card I made for Sophia's wake. I told her I couldn't read but she gave me those "please mom" eyes. I read maybe 2 lines before I started to cry, the first real tears she has seen me shed. I asked Olivia to read the rest and she did great then she laughed at me for crying the little bugger. I am blessed with an amazing little girl and have an awesome Angel in Heaven watching over us who likes to mess around with electronics.

I hope to fill her Summer with fun. I am going to have to get a job one of these days and the free time will end. maybe I will find a job that will start me out with 50 weeks paid vacation, no? Oh well.

School is going very well. Last semester I got all As, good for me. SO proud of myself. I am registered for another 3 classes this fall and I cant' wait to get back.

I hope you all have a great 4th. Olivia will be with her dad so I am sure she will have a blast. I may or may not see fireworks, I hate when Olivia is gone but I also don't get into the holidays like I used to. Both girls loved fireworks and it could get hard watching Olivia enjoy knowing Sophia is not there wo enjoy with her.

Take care and thank you for checking in with us. They say time heals all wounds, not so it just smoothes out a bit the scar is always and forever there.

Love and peace to all and keep in mind that there are always children fighting the battle for their lives and loosing.

Diane Olivia and Sweet Angel Sophia

Tuesday, May 23, 2006 10:38 PM CDT

Hello everyone,

I am sorry it has been so long since I have updated the journal. Olivia is doing just fine. She loves school and is involved in Gymnastics and Softball. We have been busy. I just attended the Advances in Neuroblastoma Research conference in LA with a friend whose son has Neuroblastoma. It was very interesting, not the research that was way over my head. I enjoyed most talking to the young researchers and medical students from around the World. I spent a lot of time discussing social welfare and cultural phylosophy in Europe. I did attend several lectures on clinical trials and new therapies, nothing seemed too promising for the immediate future but they seem to be getting close. There was a Gala at Universal Studios, the real Universal Studios, and met John Dykstra(sp) an accademy award winner for special effects in Star Wars ETC. I toured the studios and saw the set for "Desperate Housewives" not that I have ever seen the show. I had fun. Olivia spent time with grammy and papa, Daddy and Auntie Terry.

We continue to miss our Sweet Sophia and learn to cope everyday without her.

Please join the Harbor wal to benefit Sophia's Fund at Floating Hospital, the link is located above. The average dailey costs for 2 kids and one adult traveling back and forth from clinic visits can total more than $45.00/day and do not include copays or medicines. Most make these trips at least 3 times per week. Sophia's fund helps ease the burdon for families enduring treatment. Make time to walk with us on June 11 2006, it will be a great day.

Thank you for checking and please keep us in your thoughts as time goes on the whole in our hearts grows deeper. Please also keep others battling for their lives and those who have recently lost a loved on.

Love and peace,
Diane Olivia and Sweet Angel Sophia

Monday, March 27, 2006 9:52 AM CST

Hi and Happy Spring
It is getting warmer out there yeah!

Olivia is doing well. She is missing Sophia more and more. I went away fro a few days to NYC with my sister and she spent the weekend with her dad. When I came home we laid on the couch for a while watching TV and she said "Mom, is it Ok that I miss Sophia more than I miss you?" How sweet is that. I told her it certainly was Ok that she missed her sister more than me. I told her mommy always comes home and Sophia never will so of corse Sophia would be missed. Olivia is such a good girl. I don't know how I would deal with all this without her. Both of my girls are a blessing.

There are so many kids battling cancer please keep in your thoughts the Doctors worming so dillegently for a cure and that one is found so that families do not have to be torn apart by this ugly disease.

Thank you
Love and peace
Diane Olivia and Sweet Sophia Marie

Wednesday, March 15, 2006 9:41 PM CST

Hi Thank you for looking in on us. Olivia has been doing great. She participated in the Elementary School Talent Show last week and got up in front of hundreds and sang a very short but cute song "Days of The Week". She was so very brave. At dress rehersal she stood on stage for about 5 minutes in silence looking around at alol the people. She went off the stage without performing. She did stay back stage and watched some of the other kids. The kids ages in her group in the first act were K-3. They were so sweet to Olivia. They offered support and understanding. Several of the kids offered up their spot for Olivia. So what happens to these kids when they hit teenager?? Kidding. They were so cute. She watched many kids do their thing and got up the courage to go on. SHe pinched her eyes shut tight and sang loud and proud. She was awsome. I was afraid she may have a repeat of the jitters at the Show. She went out and watched me count 3 for her, shut her eyes and sang loud and proud again. What a kid. i am so proud of her. It hurts that Sophia could not be there in more than spirit. Olivia, you are a super girl, I am proud to be yours and Sophia's mommy.

Ok folks I am registered for the Cycle for Life, a 50 mile ride to benefit Floating Hospitals CHildlife program. see link above. I am also registered for the Harbor Walk to benefit Floating Hospital as a whole as well as Sophia's Family Fund, established in her memory to help families with children battling cancer and other blood disorders see the link above. Join me if you can, support me if you can. pray for me to make across the finish line if you can.

Thank You
Diane Olivia and sweet Angel Sophia

Sunday, February 26, 2006 6:43 PM CST

I know it has been a long time but there really isn't much going on. Olivia is doing well in school and loves basketball even if she just stands there playing with her hair as the kids fly by with the ball, it is very cute. She has been skiing twice, she is a great at it. She kicked her dad's but when she went with him and is a little bit better than me. She wanted to go down the bigger hills but I think she should get some more practice. I am glad she is happy, as I am not so very happy without my baby. I am brave for Olivia, as always.

I found a book a friend gave me called "Am I Still A Sister" by Alicia Sims a girl who lost her little brother to cancer. The short book contains letters to her brother in heaven and to God and some jounal entries, it is sad. Sometimes she is mad, sometimes she is guilty for her feelings about her brother while he was ill, sometimes she is happy and others she is sad. I started to read it to Olivia and thought or hoped she woule lose interest, she did not I read the whole book. Although it is a very short book it was hard for me to read and not get upset. I ended up with a sore throat from holding it back. I asked Olivia if she had the same feelings as the girl in the book had and happily she said no, not sure how I would have handled it if she had the same feelings. I think I would have made my way through it as I always do. I think she liked hearing how another person felt after their sibling died, I think she also thouhgt to herself why this girl felt so bad inside, Olivia does not seem to feel bad inside. I worry that she may feel guilty some day because she was not badly hurt by her sister's death but I hope she always remebers how much she cared for her sister and loved her sister. Olivia did everything for her sister, as much as a 4-5 year old can and more. The 2 of them were beyond their years. I hope our family will always be able to keep Olivia safe and happy, I know she will have hard times but I think she will be OK.

Now I am very sad. I am sorry Olivia does not have her sister, her best friend, anymore. I know Sophia will always be with her but that is not enough. It makes me angry. A friend told me when her youngest son passed away his brother came to her and told her when he has kids he will have three just in case. He was left an only child and hated it. I feel bad for Olivia, I love my sister and don't go a day without talking with her. Olivia will never ever have that. That makes me mad.

For those of you who think I should be over this by now (I know you are out there and you do think that, some of you have even had the balls to say it to me) Think of your children and how sad they would be without their sibling. Not the only child born, but the child with a sibbling and now suddenly without. ALl the things they see their friends sharing with their siblings, relatives sharing with their siblings. They have nothing. DO they turn away and pretend it doesn't bother them, maybe but you as a parent knows that inside they are hurting. Every time she does something her sister would laugh about there will be silence. Everytime Olivia does something big like driving a car, going to her first dance, Olivia's DAMNED first kiss, all the things she should share with her sister will hurt her. SHe knows she had a sister and will never forget that she no longer has a sister to share things with. Mommy is not good enough for that, a sister's shoes I will never fill.

I am tired and I am going to take a long shower and go to bed. I hate the world I live in without Sophia.

Love and peace
Diane, Olivia and Angel Sophia

Thursday, February 2, 2006 3:29 PM CST

You're Beautiful by James Blunt
The first time I heard this song I thought of Sophia. I loved the song ever since. The other day Olivia got off the bus and said " mom, I heard a song on the bus and I love it. Its called Beautiful." Sophia and I had a connection, we could almost read each others minds. Now I believe she is helping Olivia and me make those connections. I miss that feeling with Sophia, that I could read her and she could read me. It is so good to know I now have that with Olivia.

My life is brilliant.
My love is pure.
I saw an angel.
Of that I'm sure.
She smiled at me on the subway.
She was with another man.
But I won't lose no sleep on that,
'Cause I've got a plan.

You're beautiful. You're beautiful.
You're beautiful, it's true.
I saw you face in a crowded place,
And I don't know what to do,
'Cause I'll never be with you.

Yeah, she caught my eye,
As we walked on by.
She could see from my face that I was,
Flying high,
And I don't think that I'll see her again,
But we shared a moment that will last till the end.

You're beautiful. You're beautiful.
You're beautiful, it's true.
I saw you face in a crowded place,
And I don't know what to do,
'Cause I'll never be with you.
You're beautiful. You're beautiful.
You're beautiful, it's true.
There must be an angel with a smile on her face,
When she thought up that I should be with you.
But it's time to face the truth,
I will never be with you.

Everyone is doing well. Olivia had a blast at her Birthday party on Jan 25. I forgot to post a Happy Birthday. I also missed Sophia's aniversary. It never occured to me until last night that our friend Larry left exactly 13 months after Sophia, January 23.

Olivia's birthday was celebrated at a local hotel. They have an awsome pool with a water slide. 16 girlfriends went swimming together in the middle of winter, it was awsome.

Thank you for checking in.

Love and peace,
Diane Olivia and Sweet Angel Sophia

Monday, January 23, 2006 1:41 PM CST

God has gained another Angel today. A dear sweet friend of Sophia's passed today. A man who warmed the hearts of so many. Larry will be missed by all. He is an amazing man, who inspired so many. He gave strength to those who needed it and laughter to all. He always knew what to do or to say to bring comfort to his friends now we must comfort ourselves without him. Larry, I will miss you but am glad Sophia will have another friend to watch her and play with. Peace to you and your family.

DIane Olivia and Angel Sophia

Wednesday, January 11, 2006 9:31 PM CST

Hi everyone,
I hope you all had a great holiday. We were pretty quiet around here. Olivia and I spent a few days at the Park Plaza in Boston for Sophia's aniversary. Together with Ben, Olivia and Sophia's dad, we had a great day on the 23rd. We went to the museum of science then off to the Nutcracker. After we skated on the Frog Pond, Olivia had a blast. It was a nice way to remember Sophia. Sadly a boy I know from Floating will share Sophia's aniversary, he had survived 6 relapses over 16 years, an amazing family.

Sophia's aniversary mass was beautiful. The priest was very kind and made it a bit personal. Olivia was invited to bring the gifts. It made her feel good. After we went to breakfast with family and friends. Kids were running around the resaurant, as Sophia would have had she been here. It was a nice day, hard but nice.

Christmas was quiet. Olivia was up at 6am and tore into too many presents, it was awesome. After a morning of playing with some of her treasure she went off with her dad for an overnight stay and more treasure from the red suited man. A few days before Christmas Olivia had a private meeting with the man in red and would not say a word to him, the nudge.

Wednesday after Christmas Olivia and I flew off to Florida for a week on the beach. Marco Island was our first stop. The beach was beautiful and the weater was great. We went to the zoo in Naples and went horseback riding. After 4 days we drove to Key Largo where Olivia and I swam with the dolphins, the sting rays and a sealion. She had a blast. I enjoyed it too. I tried to talk her into parasailing but she wanted no part of it. I think her favorite part was roomservice. She thinks it is too cool they bring food to your room and you get to eat in bed, which made for messy sleeping. The weater was awesome all week.

Today was my birthday. I was not going to mention it but I must tell you all the birthday gift Sophia gave me. This afternoon I was preparing Olivia's birthday invitations for a party at the end of the month, I used my laptop to create the cards from bluemountain.com. I had to connect my printer to my laptop to print the invitations, the second I connected the printer to my laptop the printer started printing. I was watching it come out of the machine and was very confused, I had never received and error msg for a print job that was incomplete(I rarely use my laptop for projects the need printing). When the printer was done it had printed a photo of Sophia, one of my favorites. She is on the beach, her favorite place to go. I am geatful for her gift, although I did ask her what she was goign to give me for my birthday earlier today. She is always with me. Thank you Sophia. We all love you and miss you.

Thank you for checking in. Remember there are so many that are suffering with cancer or other life threatening illness, do what you can for them; give blood, donate to a charity, volenteer your time , pray for them.

Love and peace and many prayers for a quite healthy new year for you all.

DIane Olivia and Angel Sophia

Monday, December 12, 2005 10:11 AM CST

Hi everyone,
It has been a long time since my last update, thank you for checking up on us. It is a hard time of year. Thanksgiving last year we were in the hospital for a stomache flu of some kind and Sophia's ankle started hurting bad, the cancer was getting more active. Reality hit that the transplant may noy have worked and she may have spreading disease. This year Olivia spent Thanksgiving at her dads and it was just another day around here. In the evening we went to see Lion King, the play. We enjoyed it but it was long and we got home very late.

Christmas last year was a haze. Making plans for the wake and funeral services consumed me. It was awful having to wait 6 days to finally put Sophia to rest. Olivia spent Christmas Eve with her dad and the rest of the day with me. SHe had a blast opening gifts for her as well as Sophia. I made sure the gifts for Sophia were opened by Olivia so she would know that Sophia was not forgotten. I am not sure if it would have made a difference but tat is what I felt had to be done. This year Olivia will open presents from Santa and go off with her dad for the day. It will be just another day here again. Christmas has lost some of its meaning to me. All the fun of presents is gone, but is that what Christmas is all about??

The anniversary of Sophia's passing is almost here, 12/23. A memorial mass will be held on 12/24 at 8 AM. Everyone is welcome to attend. Email me ifyou would like to come and Ill send you the address. We are also having a Platelet drive with the RedCross at several locations around Massachusetts the week before Christmas. I will post it with the link to the redcross above.

Sophia has been in contact with Olivia and me. Olivia and I shared the same memory of Sophia with in about an hour of eachother and we also had the same decorating idea; Olivia wants to put lights in the grass to spell Sophia's name so she can see it from heaven, I also had that same idea. Thank you for our Christmas hello, Sophie!!

I hope everyone has a safe and happy winter season. Thank you again for your continued support. There are still many children fighting for their lives and some are loosing the battle. It is so hard to watch your child take their last breath and to know you will never hold them again or hear their voice or feel their wamth as they snuggle with you. The pain is beyond words.

Love and peace,
Diane Olivia and Angel Sophia

Monday, November 14, 2005 4:50 PM CST

Hi everyone,
It has been a while since I last posted. I have been busy with school and with Olivia. Olivia has been sick off and on for the last 2 weeks. She has been to the Dr and to a GI specialist. They believe she has reflux and has been placed on 8 weeks of previcid and seems to be feeling better, accept for Today I think she has a bug since she also has a fever along with the belly ache. It does get scary for us, I know having more than one child with cancer is rare but not impossible. I know Olivia is fine but it is hard not knowing exactly what the problem is. I hate seeing her sick. She said once she gets scared when she gets sick, all I can do is reassure her she will not have what Sophia had.

We spent a wonderful weekend at a camp for critically ill kids which offers a bereavement program. Olivia had a blast as did I. She played all weekend; arts and crafts, minigolf, computer games, pool time, scavenger hunt and more. Olivia sang in the talent show, which she would normally never do. She also participated in the celebration show. This is our second trip to this camp and both trips were amazing.

Olivia is doing well in school and having fun in CCD and her other bereavement group activities. I am so glad I have her, she is an amazing little girl. Sunday morning she said "Mom you are the best mom in the world" and I said "Even when I yell at you" She said "yes, mom remeber that time me and Sophiatold you we were running away to Grammy's house? We were only kidding." Olivia is awesome. I don't know what I would do without her.

As always thank you for checking in on us and for your prayers for our family.

Love and peace,
Diane

Monday, October 24, 2005 0:21 AM CDT

It has been 10 months since Sophia left us. It gets harder everyday. Trying to keep busy and stay focused on Oliva, but then flash out of nowhere it hits. Some memory I've tried to keep locked up for good; that really bad bloody nose in transplant,that scary horrible reaction to stemcells, the piece of central line that broke off and went to her heart (no big deal says Dr Gilchrist) that sad night at about 2 am I held her in my arms during her second transplant she was so pale and thin I got so scared I couldn't even look at her face and sooooo many others. I would not trade these memories for the world because they are all I have left of her but do they have to be so hard hitting when they come. Flashbacks as they are so called by the psychiatrists. We now can say we have "Post Traumatic Stress Disorder", isn't it great we have a name for why we are the way we are. This is why it is 1:30 am and I am writing in her journal, every time my head hits the pillow its like I am watching someone click through channells on a TV and boom it stops on one of the worst memories. It just replays over and over, I try to push it out but it never works. Then my mind works around it and reads it, did I do this right, could I have made it better, made her happier. Sometimes I feel like I am spiraling out. I had no control over the horrible things that happened to Sophia and now I have no controll over what haunts me, her suffering.

A friend of mine questions how horrible the treatment is, her son had NB and only had the tumor removed and no chemo, he was not as agressive as Sophia. 2 years later he is fine not out of the woods by any means he still has scans every 3 months. His mom wonders if this did come back knowing what the treatment does and what it so often doesn't do, she questions wether or not she would opt to treat. Another frind feels the same way if her child were to relapse. Don't get me wrong, Sophia would have been dead in a few months had we not treated her we had almost 3 more years that we never would have had, but as I remember how she suffered how our family suffered, it is a horrible disease.

Poor Olivia has a stomache "thing" going on. She throws up the next day shes fine the next she is throwing up again. The first night she says she get scared when she get sick. After probing alittle I discovered she is afraid she will get sick like Sophia. I reassure her that she will not get sick like Sophia, kids just get viruses and bugs that cause them to have belly aches. After 2 trips to DR, urine tests are normal buthe still sends the HVA/VMA just to be sure and she is placed on prilosec for reflux. I try very hard not to probe too much or look at her too long when she says she is sick or she hurts, I tease her about it more than anything so she knows it is OK. I did make a call to Sophia's Oncologist so they may talk to Olivia and ease her fears.

Olivia is a cheer leader this year for Halloween. SHe looks so cute, she went to a party dressed up today and had a blast. 10pm up with another belly ache and is now cuddled in my bed. Sophia used to climb into bed with me every night, I loved it and miss it terribly. I would wake up nose to nose with her. The last time we did that was the Monday before she died and said her last words to me"mommy, will you fweep wif me?" " I love you mommy" I can still hear her voice. She was in the PICU and the nurse came in and saw us nose to nose and she said she wished she took a picture, so do I. Well, now that tears are flowing I best get off to bed.

Many thanks for all your prayers for our families strength as the holidays come upon us.

Love and peace,
Diane Olivia and our beautiful Angel Sophia

Monday, September 26, 2005 12:06 AM CDT

Hi everyone and happy Fall,

How do I start. I used to have no problem writing this because I knew to write about Sophia. Now I get stumped. Olivia is doing great. She is in CCD now and has started a new children's bereavement group. She likes to go to these groups I think it brings back memories of her past hospital life. We are signed up for Camp Sunshine's group as well. She seems to be very happy. We went Apple Picking last weekend and Olivia climbed to the tops of the trees, she is a monkey. I miss her when she is at school.

I am getting along as well. School is OK, keeps my mind occupied. I am taking classes that involve discussions about young children, normal and developmentally challenged so I do experience flashbacks now and then. I have them anyway so it is not due to the discussions only. I have several people ask if I am in nursing or if I thought of getting into nursing but I could not handle all the yucky stuff. Sophia's yucky stuff wasn't yucky, but someone elses, yuck. Well maybe.?.

Thank you for checking in and I am sorry I don't post often but it is hard. It makes me miss Sophia.

Hi Kathy. When do you want to go away??

Love and Peace,
Diane Olivia and our sweet Angel Sophia

Monday, September 12, 2005 8:41 PM CDT

Hello everyone,
Yes I am still here after to 50 mile ride. It was actually a nice ride, full of hills but nice. It follows the ocean so the views are fantastic. I raised almost $1000, thank you all for supporting me. Olivia had fun at the beach, from which the ride began, with her pal Amanda. I saw some families I have not seen in a long time as well as Dr Grodman. I always enjoyed seeing Dr G, he is very funny. It was hard this year, so many have passed away since last years ride. I look forward to next year. Maybe some of you will ride with me??

I watched a movie tonight based on a play about a world renowned Professor, Vivian, who is diagnosed with terminal cancer, "The Wit". It is a tear jerker as she does pass in the end but it is played out as if from her journal. She speaks to the camera as if you are reading her thoughts. SOme funny parts as she has to deal with residents and know it all Docs and she gives her oppinion of each. I have seen it before and watched it with a different feeling. This time I watched it was like Sophia was speaking about her feelings about what was happening to her, or I could immagine that she might be. At the end of the movie she recieves a visit from an old friend and Vivian is clearly dying. An old woman, a coleague I think I don't remmeber, who looks down at poor Vivian laying in her bed and she climbs in and cuddles her and reads her a children's story. She leaves and Vivian is alone and quietly dies in her sleep. The awful thing is the resident is not aware of the DNR and attempts to resesitate, all that asside what I am saying is that she dies alone. SHe has a wonderful and kind nurse who cares for her as we would our children, making her comfy and answering her calls but still she is alone. The first time I watched I was crying for fear that this maybe Sophia's fate. I see now it was not, yes Sophia is no longer with us but she did not die alone. Her father and I were given the gift of holding her and stroking her as she took her last breath. I have said this many times before we have been blessed with our children's lives, they are a gift to us. I look at Sophia's life as my blessing, I gave her life and walked hand in hand with her as her life ended. That is what I have, what I must have.

Thank you for looking in on us as we live each day with out our Sophia. Remember, time does not heal all wounds. The will be no healing only slight mending, knowing that she is in a better place and that we will see her again. I feel her presence all the time as does Olivia. Sophia likes to come and visit. Please pray for all us who love and miss Sweet Sophia.

Love and peace,

Diane Olivia and Sweet Angel Sophia

Tuesday, September 6, 2005 8:30 AM CDT

Hi everyone,

I would like to thank you for all your kind words. Sophia's Birthday was a tough day but Olivia made it so much better. She wanted to have a party for her sister so I spent all day Thursday getting goodie bags and pinata and snacks etc. I had a fun busy day, there is nothing more fun than getting great stuff for a kids party. Olivia had a full day of school so we started the party late. Her friends came as well as family. We had crafts and pizza. The girls ran around screaming and yeling, it was great. I brought the cake out but Olivia did not want to sing Happy Birthday but she did want to blow out the candles, I wish I knew what she wished for. After her friends had gone and family were still around we brought out 5 blue and 5 yellow balloons and a huge #5 balloon and they were let go. We followed them out to the front yard. They were on a clear path to somewhere. Someone said they were on the way to the post office in heaven so Sophia could pick them up. It was a great day.

Olivia has started 1st grade and loves it. She wears a locket with a photo of Sophia in it. This makes her happy to look at her sister anytime during the day. I think she will always be ok. Us adults on the other hand, we are so sad and miss her tremendously. It is a chore to get up and go somedays. Most days I want to be left alone accept for Olivia. Olivia is my savior. If she were not here it would be so much harder. She is such a good kid, full or life and so happy. She laughs all the time. She is so easey too. We are truely blessed.

Thank you for looking in on us and for your continued prayers. The Cycle FOr Life is Saturday Sept 10. 50 miles is my goal. I have been sitting all summer so hopefully I am able to make it before midnight.

Love and Peace,
DIane Olivia and Sweet Angel Sophia

Thursday, September 1, 2005 8:04 AM CDT

HAPPY BIRTHDAY,HAPPY BIRTHDAY WE LOVE YOU!
HAPPY BIRTHDAY,HAPPY BIRTHDAY MAY ALL YOUR DREAMS COME TRUE!
WHEN YOU BLOW OUT THE CANDLES ONE LIGHT STAYS AGLOW.
IT'S THE LOVE LIGHT IN YOUR EYES WHERE EVER YOU GOW

HAPPY BIRTHDAY TO SWEET SOPHIA

HAPPY BRITHDAY TO YOU!!!

WITH MUCH LOVE AND A MILLION KISSES,
OLIVIA, MAMMA, DADDY, 2 GRAMMYS, 2 PAPPS, AUNTIES, UNCLES, NEICES, NEPHEWS, AMANDA, DAVE, JIMMY, NIKKI AND SO MANY OTHERS

Monday, July 25, 2005 8:35 AM CDT

Hi everyone,
It has been a long time, but we have been busy. It is hard to believe that 7 months have passed since Sophia left us. We all are doing ok. Olivia is loving her Summer; swimming, playing, travel, and more. She has been to 3 birthday parties so far this Summer. She does miss her sister but not as much as before, she has been very busy. We still talk of Sophia almost every day.

I went to Neuroblastoma conference in July. I was nice to see people I have met over the internet or from last years conference. I spent all the time in the Bereavement Sessions. I thought I would have been more interested in the sessions with the Doctors but when I arrived I realized that it was not important to hear of new treatments or new studies. The Bereavement session consisted of open discussion, a great speaker Darci Sims, and a sharing of photos and videos(which I did not participate). I had a great time catching up with a friend I met in NYC at MSKCC with Sophia, unfortunatly she was in the bereavement session with me. I met alot of very kind people.

Olivia and I spent a few days on Martha's Vinyard, an isaland off Cape Cod. We were the guests of Time For Life an organization created to help cancer patients and their families enjoy life. We had a great time. Olivia played with a girl she met in Maine at camp sunshine and she met another little girl. She was also a hit with the teens. We went to the beach and to a smal town with alot of little shop and an arcade and a merry go round. We also visited a winery and played miniature golf. I am glad we were able to go, Sophia's hospital gave me the info about this organization and I am thankful. I will continue to search for things Olivia can do to keep her feeling special and so she will always know she is not alone.

We are going away for a few days with Olivia's friend to some amusement parks, Olivia will have a great time I am sure. I do feel bad watching her having so much fun without Sophia. I see the smile on her face and immagine that Sophia is right next to her with a bigger smile and screaming as she always did. I miss her tremendously.

Thank you for looking in on us and your continued prayers for our families strength as we go on living with out our little girl.

Love and peace,
Diane Olivia and our special Angel Sophia

Thursday, June 30, 2005 7:52 AM CDT

Hi everyone,

I wanted to thank everyone for their support of the Lemonade Stand held in Boston. We had help from friends and family and it was a hot hot one. We sold about 1000 cups of lemonade, ran out of cups and lemonade, had to restock 3 times and had a fun day. The media showed from WB56 and \FOX25 also the Globe, we landed on the 10oclock news on both stations and in the following Thurdays Globe. Fox25 even mentioned my friend Maddy's stand. As far as getting the word out we did a good job we only brought in $1500 but getting the word out was more important. I hope the coverage on our stand brought in mroe for the cause elswhere. FOX25 also mentioned The Harbor Walk for Floating Hospital.

The Walk was awsome, more than 50 people signed up for Sophia's team and we raised more than 12K. It was a hot one but it was fun. The energy that is felt the day of the walk is amazing. There are alot of patients that do the walk as well as families walking in memory of loved ones. It was a great day.

Olivia has been doing well. SHe finally finished school yesterday. I hope to give her a great summer. She is not enrolled in any activities as of yet so we are free to go where ever when ever. I am not working anymore, couldn't do it not yet. I enrolled in school again, this time I should be able to stay in for the full ride. You may remember I have to drop out March 2004 when Sophia relapsed. I am looking forward to going back. I am enrolled as a communication disorders major in hopes to become a speech pathologist.

The PMC is coming up and I know a few riders who are adding Sophia to their list of names they are riding for, thank you. There is a water/rest stop in Berkley I hear so I hope to get there to cheer folks on and meet people riding in memory of my sweet girl. I hear it is a fun day. I missed it last year.

I am gearing up for a ride in September to benefit the Oncology unit at Floating Hospital, www.cycleforlife.com. It is only 50 miles and runs throught the Northshore. I have rode the past 2 years and will continue to do so as long as I can. The Oncology clinic makes buttons with a childs name and picture on it and everyone gets a button so you are riding for someone. Another inspirational day. Some of the oncology patients ride as well. Last year 2 riders had just completed chemo and rode, it was an inspiration. Sophia had just started transplant so she was unable to cheer us on but Olivia was there. Its a great time if you can join us.

Thank you for checking in. I will continue to update but as I said before it is hard for me. I remind myself all the time but still put it off. I want to fill the page with more stories of Sophia as I used to but there are no more and to bring up my feelings is to upsetting so I feel like I am just writing fluff. I appreciate your guestbook entries I check them all the time, by the way Coveny's you may see me in Chicago this year.

Love and peace,
DIane Olivia and the amzazing Angel Sophia

Sunday, June 5, 2005 11:24 AM CDT

Sorry it has been so long since I have updated. I have said in the past that is difficult to do these updates as Sophia is not here. I find it hard not writing about her much as I used to.

We are doing a Lemonade Stand in Memory of My sweet Sophia. It is is Boston at the Boston Common, a huge park in town. i have invited several MA politicians and the New England Patriots and the wives of the redsox. I hope to get alot of press coverage to get the word out.

Olivia is doing well. We had a great time at Camp Sunshine. Olivia met other kids that have lost a sibling to cancer. SHe participated in the tallent show and the celebration show. I won a trophy in the Parent Olympics. It was so great. I was very ill over the weekend but we stil had a blast. We are going to another berievement weekend in July on Martha's Vinyard and back to Camp Sunchine in November. I am so very glad to have found these camps. Olivia does miss being treated special as she was when Sophia was here. She was not spoiled but we all know how special the sibs are treated while the child is in treatment. i also had a feeling of belonging. We do not hve anything in common with most people so it is good to meet others that we can connect with.

I am off to a Graduation party for my Nephew so I have to run. I will update on the progress of our stand.

TAke care all of you and thank you for keeping us in your thoughts.

Love and peace,
Diane Olivia and Sweet Angel SOphia

Monday, May 16, 2005 11:21 AM CDT

Hi Everyone,
Sorry it has been so long since I have updated. We had a wonderful time in Florida. We had alittle rain in Disney but Olivia and her cousins, KT and Sarah, did not mind. One night we went to Epcot and it rained very heavily and the girls, and myself, had a great ttime jumping in puddles. We took it very slow not rushing to see everything so it was very relaxing. It was different from the Make A Wish trip last April. I was not used to standing in lines waiting for the characters or rides. It was not very crowded but still I felt like we should not have to wait in lines. I have been spoiled.

We also went to the Gulf side of Florida to the beach. The weather was better on the beach, low 80s and windy. We spent the days lazying on the beach and shopping at night. I could do that every day. I came home with a big bag of sand dollars and sea shells. Olivia found 2 large fish swimming along the shoreline and Auntie TErry found a seaurchen(sp?). It was a very good time.

I found a camp for kids with cancer that offers a week for berievement. I signd Olivia up for one today. She is very interested in finding other kids that have lost siblings, I think it will be good for her. She seems to be doing very well but I want to give her everything she needs to stay well. I know as she gets older she will have more issues but if I give her a good foundation she will hopefully deal with everything that comes up much better.

I would like to thank you all for your continued thoughts and prayers. Even though i don't update everyday I do read the guestbook most everyday.

Love and peace,
Diane Olivia and our special Angel,Sophia

Friday, April 29, 2005 9:42 PM CDT

hi and thank you for checking in. Sorry it has been so long since I have last updated but I sometimes find it difficult to do. It has been 4 months since Sophia passed and we all miss her terribly. Since Sophia's death there has been one other NB death, Joseph, and 2 new relapses with NB. Our Onc clinic is a small one and we are all so very close, like family. It is very sad.

Olivia is doing very well. She is very happy to be going to Disney. She loves Soccer and ruled the field a few weeks ago. She got ahold of the ball and ran. She scored a goal. What an incredible boost for her. Her first day she would stand around the sides and watch, not wanting to get into the scrum. Now she knows how to score, look out. She is enjoying gymnastics and will sign up again, we have to the next session they get a trophy and they were very good about telling her that. Oh well she loves it so she will go. She has been doing well in school, very well adjusted. Her teacher has asked if I can try and ease her into new topics for her journals. Every journal is about Sophia which is OK but she wants to make sure Olivia can write about other things. Sophia was always the creative one when it came to making up stories. Olivia is more private about her pretending and creativity so I will have to help her along abit first.

I mentioned my last entry Olivia was going to a children's berievement group. SHe did enjoy it, however, I did not enjoy the parents meeting. Many of them had lost husbands and were very angry. It seemed that anytime the children wanted to discuss the lost loved one the parent would get so upset that the shildren would stop talking and now required an outlet for their feelings. I have very open communication about Sophia. Questions come up about why they could not fix the "motor" in Sophia's belly or why some live live longer tahn others. She was looking at Alexandra Scott's book today and asked how old she was when she went to be with God, she seemed ever so slightly (and I want to be very careful because it was so very slight) jealous that Alex was here longer than Sophia as Alex was 8 yrs old when she went to be with God. I was very honest in telling her that although her family did have alot of fun in those 8 yrs but Alex also spent much of that time very very ill. She seemed to understand but it will take her long time to fully understand that Sophia was suffering and it was better for her to be at peace. I will always keep the lines of communication open and honest enough for her level of understanding. I am always amazed at how her mind works. Olivia, as Dr. Wolfe has said before, is destined for greatness and I hope she realizes her greatness and look forward to seeing exactly what that is.

I had a "final" meeting with Dr. Wolfe, SOphia's Onc, the other day to discuss Sophia's last days here. I had concerns about why she looked the way she did, very different that some of the other wakes that I had been to. I was afraid we had kept alive by venting her. I felt guilty that her suffering was prolonged. He explained things to me and I feel better. I also discussed with him the conversation I had with one of the other docs in the clinic, Dr Wolfe was not in town until just before Sophia passed. He was insisting we start radiation, I refused I knew there was nothing they could do if it was cancer in her Liver, which I was almost certain it was. He made me feel bad that I did not want to put her through that. Dr Wolfe agreed that the conversation would have gone differently had he been there and that made me feel sooo much better. He is human and I know we had a difficult relationship but he is an amazing man and appreciate all he has done for me before and after Sophia's passing.

I love you Sophia, forever.

Love and peace
Diane, Olivia and our very own Angel Sophia

Thursday, April 14, 2005 8:45 PM CDT

Hi and welcome back. I am glad you continue to check in on us. Olivia is doing well. SHe is loving Soccer. Her coach in a 14 year old boy from town adn he is very cute. She has 2 little girl friends she pals around with in school, one lives very close by. She is going to a birthday party at the end of the month for a girl in class too. Olivia seems to be very happy. I am going to bring her to a Children's berievement group just to try it out, she may not like it. There will be alot of kids there who have their parents so I am not sure she will get too much out of it. I also have to be careful not to scare her. We will see

We now have a large trampoline for the house, Olivia and all the other kids love it. She wants to jump everyday. It is good for her to have something outside to do. I am not the best palymate all the time so she now has something to keep her occupied. I have also had a hard time calling for play dates. I used to call for playdates all the time before Sophia got sick but I have been trained not to have people around Sophia that I am uncomfortable calling for playdates. Hopefully with the warmer weather coming we can spend more time out in the neighborhood meeting other families.

We are getting ready for our trip to Florida. Olivia cannot wait. Cousin Sarah counts down the days for us. Is it 16 today, Sarah. I am looking forward to going to Disney this trip and so is everyone els. Olivia will have a great time with Auntie Terry, KT and Sarah.

I have been having more bad moments these days. I feel useless, like I should be doing something for someone. I wouldn't say I am depressed but helpless, I think. I need the warm weather so I can spend more time outside. I am not as gunghoe about the walk either. I should be out collecting pledges but I cannot seen to get myself out there. Also I am not interested in going to work either. I am sure I will get out of this funk soon.

Below is something I found while searching for a poem for a friend who recently lost her daughter:

Prayer to Sophia

Wise and Faithful Guide,
you lovingly abide in my depths
and graciously guide my every step.
You lead me to ever stronger growth
and draw me more fully toward inner freedom.
I thank you today for the awesome ways
in which you constantly enter my life
as I pledge my life to you again.

This day I renew my life's purpose
of being faithful to our relationship.
I give you my openness
trusting that you will lead me on paths
that are meant to help me grow.
I re-commit my intention
to listen to you in all of life.

I promise you my daily discipleship
so that I may be an instrument of your love.
Most of all, I give you the loyalty of my heart.
May I do all in the circle of your wisdom
and learn from your dance of compassion
in every corner of this universe.

Source of Inner Luminosity,
thank you for being a loving radiance.
May the lantern of your perpetual goodness
always shine in me and through me.

-- Joyce Rupp

Monday, March 28, 2005 7:18 PM CST

Update rom Joseph Messina's page (link above)
Journal

Thursday, March 31, 2005 9:54 PM CST

Hello. This is Mike, Josephs brother. I walked home today from my bus stop and my uncle was at my house. He took me to Bainbridges Restaurant in Chelmsford. At the restaurant, my mom called and we had to leave our meals and go to the hospital. I drove 1 hour into the hospital and went to the 6th floor, the PICU (Pediatric Intensive Care Unit). I pushed open the glass doors to Joseph's room and found little Joseph lying on a bed with a very lound pumping noise (the respirator). Everybody was very scared. Me and my family decided that it would be best to turn everything off. There was nothing else the doctors could do. It was very hard. I saw his stomach going up and down slower. We watched Joseph pass away at 7:28 tonight and my mom held him in her hands. We got a handprint of him to put in a special box forever. I think it was way too early for him to go away. Everybody was acting all sad everywhere we go. We went home.. just the four of us. I feel okay now. I might not be in school for a little bit. We will post the funeral stuff soon. See you later.
END
Stop by and offer some support.
___________________________________
Sorry it has been so long since I have been by to visit. All is good here. Sophia has lost a few friends from the hospital last week, so it has been pretty rough. It has been three months since Sophia went to be with God, I miss her. Olivia was looking through her memory box she got from the hospital the day befre Sophia left us. In it there is a lock of Sophia's hair, it smelled like soap. I smell everything, I found a pair of shoes she wore everyday over the summer they smelled like rubber not Sophia. I cannot find her smell anywhere, that makes me a little sad. I hoped there would be something more than photos or drawings. Nothing brings a memory like a smell or a taste, I cannot smell her but I do feel her. I was in bed asleep the morning of the 23 (wednesday) and I very distincly heard Sophia's voice say "Mommy, I need you" it was just as she would say it if she was trying to put on a shirt or pants or shoes and just couldn't get it right. It was not frantic, very casual mommy I need you. I almost sat up to tend to her and realized she was not here. I settled back and listened to see if it was Olivia but it wasn't I knew it wasn't because it was Sophia's voice. I waited to see if I would hear it again and I did not so I went right back to sleep. It was so casual an event I almost forgot about it. I did not even realize until the next day the it was Sophia's anniversary. I think it was from her but I don't know what she needs from me. I am sure she will let me know.

You may notice I changed the photo. It is of all the grandchildren, less Sophia and a cousin from NY. The missing kids will be added later. You may notice the ring of light in the second row of kids. This photo was taken several times, as kids can be very fidgity, to get the right one. The ring of light apears in only one photo. Is it Sophia??

We have been keeping busy waiting for the weather to get warmer. Today we got out for a bike ride and got rained on, Olivia loved it. I moved the training wheels up and she did great. She has been riding a toddler sized 2 wheeler without training wheels but I got her a big girl bike and she is higher up off the ground so the training wheels will stay on, just in case. She can't wait to get rid of the training wheels, I am not ready yet. We are planning a camping trip for the summer with some of Olivia's cousins as well as the Disney trip. I am looking forward to a busy summer. Work is slow. I have not been going in due to the wakes and funerals and emotions that result. I am sure I will soon fall into place there. I am in no rush.

Please see the poem I added above. It was written by a published poet in memory of Sophia. Also continue to look in on Joseph(link above) he is having a difficult time now. Thank you for looking in on us and continuing to pray for our families strength. We are doing fine, I think.
Love and peace,
Diane Olivia and our prescious Angel in Heaven, Sophia

Wednesday, March 16, 2005 8:08 AM CST

Hi everyone,
Thank you for checking in. Olivia has been doing very well. She is happy in school and with her other activities. We signed her up for Soccer and she is srill in gymnastics. She has had several Skiing lessons and loves it. I hope to get in a ski trip next year. We have planned a trip to Disney in May. I can't wait. Our wish trip was very hard, Olivia had a virus and Sophia was feeling yucky from chemo and the stress of getting back to Boston for scans it was not the best trip. We are spending 4 days in Disney and then off to the beach, Sophia's favorite place. There maybe another trip to Disney in September with the whole family. YEAH!!!

I am getting slowly back into the workforce. SLOWLY. I have also started going to a gymn to workout and get back into shape because I am not ready to drop chocolate. I seem to be doing pretty good, I do have some hard moments but Olivia is always there to make me laugh. she is always good for a laugh.

There is a bandaide drive going on at the Hospital. They need cool bandaides that the kids would enjoy. If you get to a Walmart or CVS pick up some cute bandaides and send them to me at PO Box 728, Carver, MA 02330. It is for a good cause. I am also registered for the HArbor Walk for the Floating Hospital. It is a 6 mile walk around South Boston Harbor, join me if you can if not make a donation. See the link above.

Thank you for checking in on us and please continue to pray our family's continued strength. Please also remember to check in on Sophia's friend Joseph, he is having a difficult time right now. See the link above.

Love and peace,
Diane Olivia and our Angel Sophia

Sunday, March 6, 2005 12:31 AM CST

Hi everyone,
It has been a while since I last updated you but we are just going about our lives like a normal family. It is good but would give it all up again to have Sophia back?? I guess not as she woud still be sick and suffering and Olivia would be suffering too. I spoke to a mom the other day with a child who has had cancer for along time and has been away from her other children for a long time ad she just wants to be a normal family again. She envies, almost, my situation; how I come and go as I please, take Olivia where ever I want when ever I want, how Olivia is able to have playdates and go to school and be a normal 6 year old. How awful life can get. That the only way to be a family again is that you live through your worst nightmare, the death of your child. There is no help for some of these kids and I don't mean just neuroblastoma, the family I was speaking did not have neuroblastoma but some other solid tumor cancer. It is all nasty

Olivia is still doing very well. Asside from what seems to be a constant cold she is having a great time. She tried skiing the other day and loved it. She is in Maine with her dad this weekend and I hope she is going to get another opportunity to ski. We are signing her up for soccer or softball, maybe both. She is now in her second session of gymnastics. She is very happy.

Please look in on Joey Messina(link above) he is having a difficult time. Pray for him and his family and offer some support for his family.

Thank you for looking in on us and you prayers for my family.

Love and peace,
Diane Olivia and our Angel, Sophia

Monday, February 28, 2005 9:22 AM CST

HAppy Monday to you all.

We have been a bit busy. First I wouls like to remind you all that Wednesday February 23 marked two months since Sophia went to be with God. I reminded Olivia and she said "Oh OK" Good girl Oliv.

Olivia had School vacation last week and we spent most days home in the mornign playing games, reading books, playing in the snow and watching alittle TV, the afternoons were spent at gymnastics camp. She loved it. It was 4 hours a day mon-thurs. She played, climbed, jumped, met new friends and did a craft. I am glad I signed her up. She was very happy to get back to school today.

Yesterday,Sunday, we attended a Remeberance Day Memorial for all those who lost their children to cancer over the years. I was surprised at how few people there were. It was nice, Sophia's Onc spoke some kind words followed by a lengthy talk given by a psychiatrist and some soft music. The ceremony was ended by a reading of all the children who passed and as the names were read the attending family would go and recieve a flower and sign the guest book. Olivia was very happy to go up and get Sophia's flower and sign the book. She is such a great kid. She did a great job and I am very proud of her.

I am going to try my adult social skills on again and attempt the business world. I am not so sure I will be a success but I trying it anyway. I am only going to work everyother weekend and on Wednesday afternoons. These days Olivia is with her dad so I do not feel as though I am leaving her. This company I have worked for over the years and always has an open door for me, I appreciate that. It is funny, I went to work for them in the 90s, not sure exactly when, and Ben, the girls dad, got into a serious dirtbike accident one week after I had started. I had to leave for a week to go to New York to be with Ben. I worked up until I delivered Olivia and took about a year off. I was going to go back to work for them and I discovered I was pregnant with SOphia so I decided to wait. I attempted another return to work and a week later Sophia was diagnosed with Cancer so I left again. I planned to return yet again last September, Sophie was doing well and we had finished our trips to NYC so I thought I was safe. I was not even back in the office when Sophia contracted a blood infection, off again. I gave up on the notion of returning to work, school was the place for me. March 6th, relapse, withdrawal from School. Did you know that if you get financial aide for college and withdraw halfway through you are responsible for the bill, fancy that. I am going back to work there had better be nothing in my way, damn it. I intend on getting some peace and socialize with some adults who do not have children with an illness or any medical backround.

Plaese look in on Joeseph Messina, Sophia's buddy, he is having some difficult times. Offer some support to the family. Pray for his NB to be gone.(Joey's Page Link above)

Well I am off to the store before Olivia comes home. Thank you for checking in on us. Please continue to pray for our family's continued strength.

Love and peace
Diane, Olivia and the forever four Sophia

Wednesday, February 16, 2005 8:15 AM CST

Happy belated Valentines day.
The above photo taken right after we came home from transplant #3. We climed a small mountain, which we did often when it was warm. Sophia and Olivia loved it. It is a better photo than the Christamas one.

Everyone is doing well. Olivia has been keeping me busy, walks, playing games, gymnastics and rushing to catch the bus. I was never one to sit in all day before Sophia got sick, we were always running to the mall or the park or to a play group. It seems almost nice to get on the move again and not to the Hospital. Olivia seems very happy but I am keeping a close eye on her. SHe sees Sophia everywhere and in everything she does, it isi very sweet.

I was speaking to another cancer mom the other day and then to the parent counselor at Floating Hospital about the absence of fear in my life. Well I should not say that, the new fear is that something horrible might happen to Olivia. The fear of when is Sophia going to loose to the cancer, the fear of the next scan, the fear that lurks around every complaint of pain is gone. I feel releif, I think, I say "I think" so I do not sound cold hearted. I do miss Sophia tremendously but all the anger, fear, helplessness, hopelessness all that is gone. I saw a boy yesterday out walking with Olivia and the dogs and she stopped to say Hi and I almost said "not too close" as I always would but realized I did not have to worry about Olivia catching any bugs. Olivia is free. . . Any of you going through what we have been through knows the feelings I am talking about. For those of you who do not know and are standing in the side lines watching or turning away not watching, get closer and try to feel it. We should learn to appreciate things more by watching families endure the long and frightening road of illness. You watchers need to learn to be more compassionate and understanding. Don't take a harsh tone personally, think about how you would be fighting for you child's life. If you go to the grocery store call and ask if anything is needed or don't call and show up with a bag of milk and bread and papertowels. Bring over a meal, get the neighbors together and each one take a day of the week and bring a meal. So many days are spent alone do not think that they are too busy or too tired for a phone call. The truth is that we are but it nice to know that you have not been forgotten about and we may have something to complain about so get ready. Offer to take the siblings out for the day and do something fun.

We were worned by our oncologist in the beginning that be prepared for noone to be around to help after a while, be prepared to loose friends, be prepared for the phone calls to stop. The is no way to be prepared for that. Please do not let that happen to a family going through this. Go out of your way to make them feel as though they still exsist in the normal world even though they do not participate. Call and offer to come over for a visit, they will tell you if they are too . . . . and if they are try again in a few days or a week. They may eventually just have a bad enough day that they want to scream to the world about their sick child and wouldn't you want to be there?

DOne preaching.

Thank you for checking in on us and making sure Olivia is OK. Continue to pray for Olivia that she continues to be OK.

Love and peace,

Diane Olivia and forever mine, Sophia

Monday, February 7, 2005 8:17 AM CST

Hello

It has been along time since my last update, sorry. I find it difficult to do this as it stirs up many emotions.

Olivia has started school. Finally the snow cleared enough for her to start last Monday. Today she rode the bus. How difficult for me to let her go. I never found myself to be the type of person to not let go of their children, however, since Sophia's passing I found it very difficult to let Olivia go off to school, ride the bus and probably go off to a friend,s house without me staying with her. It makes me very angry to be this way. As i sit here typing I am wondering if i should call the school to make sure Olivia arrived OK eventhough I saw her get on and sit down. On Wednesday of last week I allowed her to ride the bus home and when the bus did not arrive when I was told to expect it I called the school, that is not me. I am sure I will get over it.

Olivia is starting Gymnastics today. She is sooo excited. She needs to start, she is such a monkey. I am also going to sign her up for a Gymnastics camp she can do over February break. It is nice to be able to plan things and be almost garenteed the plan will be a go. WE are looking into Soccer for the spring and what ever we can do that other normal kids do. Is normal OK??

Life is very weird without my buddy in tow. Without her asking where we were going eventhough I already told her 3 times where we were off to. Without looking in the rearview mirror and seeing her bobbing her head to whatever the tune may be on the radio. Without rushing off to Boston to see Dr Grodman and Maryjo. Without her playing her buddy, Olivia. Without the medicine schedule, the portable IV bag,
and all the other supplies I would need for the days trip to the Hospital. Without seeing all my friends everyday at the Floating Hospital Country Club social hour. Without Kerry to play with the girls while I ball my eyes out in Katie's or Pricilla's office. It is so very weird.

I appreciate everyone checking in on us and your kind words. No one knows what to say I am sure but even to say "Hi" is great. Please continue to keep our family in your prayers, for healing, for Olivia's strength to endure, for us all to be OK. Thank you.

Love and peace,
Diane Olivia and the forever 4 Sophia
(I realized I must keep Sophia in my closing)

Tuesday, January 25, 2005 6:52 AM CST

Thursday, January 6, 2005 11:07 PM CST

Thank you all for your support in this difficult time. It is so quiet without our outspoken little wonder. Papa seems lost without Sophia yelling at him to go to his room as she did every day, all day. He will her sitting on his lap in the evening and watching cartoons. He will miss her playing doctor with him and giving him yucky medicine. He will also miss Olivia's playing as well. He was the one who cared for Olivia most while Sophia and I were in the hospital. I would hear stories from Papa of the games of pretend Olivia used to play. Papa has said he will mis his buddy. Olivia has already stopped playing most of the games that she and Sophia used to play with Papa.

Olivia has been doing great. She has been out to lunch several times and dinner and two movies. She talks about going to school and gymnastics and new friends. She said today, and please take it as it was meant from a sweet 6 year old it was sooo sweet, "It was nice that Sophia went to go be with God". I agreed with her and told her that Sophia did a nice thing for Olivia to go be with God. She talks about her sister all the time. She asked if we could have a birthday party for Sophia on her birthday so we don't forget her. She commented on the fact that Sophia was never able to have a baby, she said she wanted to have a girl so she could name her Sophia. She will see something that would make Sophia happy and always remembers her. A special bond she will hopefully cherish forever.

We will be leaving for Florida, to the beach, on Wednesday Jan 12, the day after my Birthday. I will have to picture Sophia singing Happy Birthday to me with her sister, as she always loved to do. Sophia went through a period of constantly singing Happy Birthday to herself and others, it was very cute. I am looking forward to getting away from here and going some place warm, I hope.

I want to thank all of you for the many emails and cards and guestbook entries. You have all been a big part of our lives for so long I hope you continue to follow us as we continue our journey without our beautiful little girl. I will continue to update photos and journal as much as possible.

Love and Peace,
Diane

Thursday, December 30, 2004 9:46 PM CST

I want to start by saying thank you to the many who came to share in the celebration of Sophia's wonderful life, traveling from so far away as Minnesota and Wisconsin. It warmed my heart to see Ann O'connor's dad and Carl Robinson's parents. Carl's brithday was on Tuesday and Kelly and Tom missed a balloon release in his memory to say goodbye to my Sophia.

The service for Sophia was beautiful. So many came to say their goodbyes, nurses who took care of Sophia, parents from clinic, even Anna who used to come and clean Sophia's room when she was inpateint. The canter was wonderful, her voice was beautiful. While attending the Christmas Eve Mass at another church I heard the canter sing and the minute I saw her I knew Sophia would love her. I could see Sophia walking away from me to go up and grab her hand and sing with her, it meant so much to me that she came for Sophia. Sophia's dad read a beautiful tribute to Sophia and her sister. Father Quinn was amazing. He was so compassionate, it was as if she was his own.

Olivia, my sweet girl, was amazing. I have to start from the when we told Olivia that Sophia would be going to be with God. On Wednesday evening Olivia came to visit Sophia, she was a bit nervous but after a few minutes she warmed up and was wanting to kiss and hug her sister, dispite the vent and tubes. We sat her down in the family room and told her the cancer had made its way to one of the "machines" in Sophie's belly and they could not make it go away and Sophia would go be with god. She asked why and I repeated what I said before and added that the Docs did everything they could but her machine had too much cancer in it. She was alittle sad and I had made arraingements for Olivia to talk to one of the child life specialists, Kerry. After I found out Kerry was very upset and not too sure she would be able to do it, but she was amazing and I am proud that she was able to do this difficult thing for us. I have no idea what happened or what was discussed between the 2 as I was asked by Olivia to leave, which was very much OK. After about an hour Olivia came running down the hall giggling, Kerry followed with paints, paper and a box. Olivia yelled"we're going to paint Sophie's hands and feet" she was so happy. Olivia picked out 2 shades of blue,one represented the ocean. We proceeded to paint each foot with one of us helping with each hand and foot. She laughed and bounced on the bed and when she painted her left foot Sophia wiggled her toes. I laughed and said "look you tickled her toes" this cracked her up. I then found a pair of sizzors and tried to sneak over to cut Sophia's hair, I tried to make it like a secret so Olivia would think it was funny. I sshhhhed Olivia and proceeded to snip, Olivia yelled out, "Sophie, mommy is cutting you hair" and cackled out loud. I was so glad Olivia had this positive experience and SOphia responded to her sister's touch. All of the items; hand and foot prints, hair, and some small toys one of the anesthesiologists gave Sophia went into the memory box Kerry gave Olivia. It was amazing, the experience made me feel that Olivia would be OK. Olivia said goodbye to Sophia and I walked her out. I wanted her to go with my parents but she did not want to leave. We talked some and she said she did not want Sophia to go be with God. We talked about how sick Sophia had been and how much pain she had been in and that this would be better for her. She asked if we were going to put Sophie in a box and I said yes and asked if she would like to pick the box. She was very excited and the discussion went to picking the dress and then the flowers and then the bow for her hair and how that bow would be attached to her head. It was the most incredible conversation I have ever had with anyone and I look forward to many more with that amazing little wonder of mine. SHe was so excited to do these things for her sister, the most kindest act of love. I am so proud of my girl.

On to the wake. So many people, I was honored by the outpouring of emotion for my baby. Olivia walked up to her sister and so lovingly and couriously touched her and all the little items in the casket. Olivia walked around saying hello to everyone. Olivia noticed that my neice was very sad so she went over and hugged her. She was very cute offering evryone a dab of Purrell to wash their hands as well as glasses of water, the perfect host. At the funeral service she sat between mom and dad but a sadness came over her and she clung to me. She wanted to lie on me as she said she was tired. I told her it was OK and reminded her of the party after the service and she immediately perked up. She even left me and her dad to sit with a friend. She has done so well, asking all the right questions and I hope I am giving all the right answers.

Today I brought Olivia to her pediatrician to update her shots so she can start school soon. After we went to lunch with the very cool Auntie Hariet. Followed by a trip to the toy store. Normal day?? We talked about going to the movies and joining Daiseys and gymnastics. A few days ago Olivia came down with a cold and asked if she would have to leave(she would have to go if Sophia was still here)and I tlod her no way and she said "because Sophie is gone". She is very ecxited to start her new life; School, friends, everything. She also told me today it makes her sad when people talk about Sophia too much, I told her I would try to remember that. SHe is so brave and strong, am so very proud of her.

This coming eve of the new year brings alot to our family. Life filled with only memories of Sophia, my baby. A new life without the possibility of death always looming. Olivia is getting so big. SHe will be starting school, sports and many other social activities. How she is looking forward to her new found freedom. I know to some it may sound very cold but there is a feeling of relief that is coupled with this sorrow. I have been told that in a few months it may hit me hard that Sophia is not here anymore and if it does I will listen for her whispers in my ear and feel her hand on my shoulder and be OK. I will also watch out for Olivia to be sure she is OK too.

For Olivia
I cried tears of sorrow today for I had but one child
to wake me up in the morning,
one child make breakfast for,
one child to wash and dress,
one child to play games with,
one child to caress,
one child to tell me goodnight and I love you.

I cried tears of joy tonight for I have one beautiful child to hug me and tell me she loves me, for that I am blessed.

Thank you for all your kind words. I am sure we will be OK after some time. I have been blessed with Sophia's life and honored that I was chosen to be her mother.

Saturday, December 25, 2004 12:22 AM CST

Please come, all are welcome
Donations in lue of flowers to be sent to Sophia's Family First Fund, C/O Pediatric Hem/Onc Clinic, New England Medical Center, 750 Washington Street, Boston MA 02111

Visitation
Sweney Brothers Funeral home
1 Independance Ave
Quincy, MA 02169
617-472-6344

Tuesday December 28 2004
4pm-8pm

Services to be held at:
St John the Baptist Church
School Street
Quincy, MA 02169

Wednesday December 29,2004
10 AM

Recepetion immediately following:
Sheraton Braintree
Forbes Road
Braintree, MA 02184



I see the countless Christmas trees around the world below.
With tiny lights, like Heaven's stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear;
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear.
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring.
For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart.
But I am not so far away, we really aren't apart.
I cannot tell you of the splendor or the peace inside this place
Can you imagine Christmas with our Savior, face to face?

I will ask him to light your spirit as I tell him of your love.
So then pray for one another as you lift your eyes above.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do.
For I can't count the blessing or love he has for each of you.
So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

Thursday, December 23, 2004 6:32 PM CST

It is with great sorrow that I tell you all Sophia became an Angel today at 5:45 pm. The Neuroblastoma metastesized to her liver and was discustingly aggressive. She went to be with God calmly in her daddy's arms. I will update the araingements as soon as I have them.

She made me very proud. i asked her not to go on Christmas or Christmas Eve and she listened. Thank you Sophia.

Thank you all for staying with us and following Sophia's journey through life. I am blessed to have been her mom. She has taught me more in her short life then I will learn over the rest of my life time.

Love and Peace,

Diane Olivia and The Forever 4 year old Sophia

Tuesday, December 21, 2004 6:49 AM CST

Sophia will have a biopsey today to see if the cancer has spread to her liver or it is Veno Occlusive Disease, a complication of transplant. VOD is better than cancer but there is no treatment for it, we just wait it out. She has been placed on a vent to help her breathing. I will update as soon as I know more.

Diane

Tuesday, December 21, 2004 6:49 AM CST

Sophia will have a biopsey today to see if the cancer has spread to her liver or it is Veno Occlusive Disease, a complication of transplant. VOD is better than cancer but there is no treatment for it, we just wait it out. She has been placed on a vent to help her breathing. I will update as soon as I know more.

Diane

Saturday, December 18, 2004 11:09 PM CST

day +91

I am not going to get into what went on over the last week. Sophia is now inpatient. She had been experiencing belly pain for several days and got to the point where it waws not manageable at home. She has an enlarged liver. She has had several tests to rule out a virus and Veno oclusive disease. The docs do not think this is GVH of the Liver. She does not show the normal signs of someone with some sort of liver infection. Her skin is not showing signs of jaundice and her liver functions are only slightly elevated. They are not sure what is going on. Sophia is on continous morphine for pain which is making her extremely aggitated. A urine was sent out for HVA/VMA on friday but that takes about a week. She will probably have an MIBG scan on Tuesday or Wednesday of next week.

Please pray this passes and she is well again. She has fought so hard for so long she must get better.

Love and peace,
DIane and girls

Tuesday, December 7, 2004 12:37 AM CST

Hi everyone,
I am sorry I have not updated in awhile but I have been very busy. Sadly there were three little ones who lost their battle last week. One I knew, beautiful Carl, and two I never had the pleasure of meeting. I cannot immagine what these families are going through. I met a woman today in radiation oncology and she said how sorry she felt for us that we were going through this, a woman who herself is battling cancer felt sorry for us. This is a nasty disease for everyone, no matter how old or young.

Sophia has been doing OK, her spirits are up and down. She is not eating, probably due to the cyclosporin making her nauseas. Also her drive to eat has gone way down due to the steroids she was on. Steroids give the kids a false drive to eat so they inhale food like they have never had food before but when they stop the steroids they have to get their own drive back. So we wait. She will start IV fluids tonight to try and get her need for calories up. She has also started pain medication, oxycodone, for the pain in her leg. Did I mention she was having pain in her leg?? She started having pain in her leg the weekend after Thanksgiving. The pain is caused by the spot of cancer in her tibia(ankel). She will have 4-5 weeks of radiation. Hopefully it is enough to irradicate this last spot she has and she will be done.

Olivia made the news last week. There was a fund raiser for Floating Hospital last week at the AKC dog show in Boston. Channel 5 asked if one of the families from clinic would participate in an interview and Olivia volenteered. The theme for the evening was Circus so I dressed Olivia as a Tight Rope Walker. She had a blast. http://www.thebostonchannel.com/health/3969699/detail.html

Thanks for checking in. Keep Sophia and all the others battling cancer in your prayers.

Love and peace,
Diane and Girls

Saturday, November 27, 2004 10:33 AM CST

Please read the following post taken from Sophia's little friend, Carl's, web page.

Saturday, November 27, 2004 7:51 AM CST

At 8:45pm Friday November 26th, Our Precious son Carl flew to Heaven with Jesus and all of Heaven's Angels. Carl was without pain, or suffering, he drifted off to sleep peacefully in his Daddys Loving arms. The tears are flowing as I type this journal that I have feared and dredded from day one, of carcar's website, and journey. It still does not seem real. It actually feels like a bad dream we will wake up from, and go on... Carl is not here with us, but his Spirit remains embedded in our Hearts and Minds. How could we forget a little boy that has touched so many lives and Hearts in such a short life... his memory will live on Forever!!!!!

Carl had a very nice Thanksgiving day at Auntie Sheila & Uncle Johns. He got to see most of his relatives, and enjoy time with his cousins that he adored so much!!! We visited Grandma & Grandpa Greer and my Sister Holly's family in the afternoon!! Carl even showed some interest in eating, although he wouldn't try anything. He slept pretty good through the night, but then woke up early with some pains. We gave him morphine a couple of times, over a short period of time. Tom brought Carl to the Redwood Falls Hospital to check his blood counts, as we expected his platelets would need transfusing on Friday. He did get platelets and red cells as well...they were also low. Tom thought Carl was pretty good all day at the Hospital, and he even took a couple of bites of pizza for lunch!! I later came up to the Hospital after work, and stayed with Carl until he was done with his transfusions.

Carl slept most of the time I was with him, but Tom had gave him another dose of Morhpine right before I got there. When we got done about 4:00pm we left to go home, and I needed to give him more morphine when we got to the car. When we got home, Carl crawled back into our bed and rested for awhile. I started his tube feeds to get some nutrition in him, and he rested. He continued to get more pains, and his tummy was looking more distended, so I shut off his feeds to let him rest. I had planned on taking Sam, & Bryan to the movies, and we were going to meet cousins Jenny, Jessie, Jackie & Uncle Denny. Tom was going to stay home with Carl to let him rest. Carl's pain was increasing after we left, and Tom was getting concerned about not controling his pains. His tummy appeared to be expelling some air through his g-tube, so he called the ER at the Hospital and talked to Nurse Heather about Carl's situation. She knows Carl and has helped us before with his g-tube when it had fallen out one time, so she was very helpful. Tom tried to draw out some fluid and air from Carl's tummy with a syringe, and it did help to relieve some of the pressure. Then Tom decided to bring Carl into the Hospital, to see if they could help make him more comfortable with his tummy.

The doctor on call was waiting for them to get there, and talked to Tom about Carl's condition. Tom realized that he did not have much time left at this point. The nurse sent for someone to find me at the movie theatre. I flew out of the theatre and got to the Hospital within minutes, and as I was walking down the hall the nurse came to tell me that Carl had already passed. It was only a short time before I got there. Tom held him and they helped him breathe with some oxygen, and Carl gently drifted off peacefully without any distress. It was a Blessing that he went so peacefully.

After I got to them Carl looked like he was peacefully sleeping in Toms arms. I held Carl then for awhile, kissed him and snuggled with him. Then Uncle Denny & the girls and Sam & Bryan came to the hospital. It was very difficult telling the boys about what had happened so unexpectedly this evening. Bryan came in the room and saw Carl, and he held him for a little bit too. I think that helped him to tell him how much he Loved his little buddy. Sam seems to be doing ok, but we will need to give him lots of extra attention and Love and try to help him talk about his feelings too. We stayed at the Hospital for a couple of hours, and more relatives came to offer support. My sister Holly & her Husband Terry came too. We all spent alot of time hugging and crying.

Sydney was in Texas with Her Daddy for the weekend, so she did not find out about Carl until this morning. We phoned Jeff, and he gently told her about her little brother. Then both Tom and I talked to her too. She will be coming home later this evening, Jeff will be driving her out to the farm after their flight gets in. I know Sydney will be a big support help for both Bryan and Sam, she is such a good girl, and she is so strong for a little girl.

Today Tom and I will meet with the funeral director, and try to make plans for Carl's service. We are not sure of any dates yet, we are thinking about next Tuesday or Wednesday to allow for making plans and for travelers. As soon as we know more we will update on our plans.

Thank you all for all of your Love and Support, and for all of your Prayers that have kept us so strong!!!! We Love you all and we Cherish your presence in our lives!!!

God Bless you all+

with tears,

Tom & Kelly
& Family
___________________________________________________________

There is nothing I can say but he went too fast. I am heartbroken. Kelly and Tom, I love you guys and I am so so sorry. www.caringbridge.org/mn/carcar

Thursday, November 25, 2004 11:39 AM CST

HAPPY THANKSGIVING

Day +69 and doing great

Crit 38
hemaglobin 13.8
platelets 180
ANC 3100

Sophia is doing very well. She has a bit of a stomache bug, I hope, so we are inpatient for about 18 hours. She threw up a few times last night so I brought her in for some IV fluids. She has not been sick since 9:30pm last night so I am sure we are going home late this afternoon. She does not mind being in the hospital, I think she actually enjoys it.

So here's the scoop. Sophia's MRI came back confirming the leision on her tibia. It is slightly larger than the last scan from August. However there are no other spots. This is very good. Now we have to work on the tibia. The plan is to start radiation next week or early the following week. The Radiation Oncoligist is expecting to do 4-5 weeks of radiation. It will be fairly non invasive since it is in her leg and not her abdomen. She may experience some fatigue but other than that she will be fine. Ther leision on her tibia is on the growth plate and the radiaiton will dammage it. So one long term side effect of the radiation will be that tthe tibia will not grow as it should. THey said that orthopedic therapy may help but she will have basically the ankle of a 4 year old, shorter and thinner then the other. No biggy if this is the last thing she must endure for a cure we will help her cope when she gets older. She also is minus one broviac line, it was pulled on Tuesday.

Sophia is doing remakably well. She has excellent quality of life right now. All things would be perfect if she were not isolated. After the radiation is complete I think we will go on a trip somewhere warm, if Dr Grodman says it's OK.

Please continue to pray that this is it for her and the Neuroblastoma is gone. Also please keep the other little ones fighting this disease in your prayers. Little Carl Robinson is having a tough time right now as well as Joey M. www.caringbridge.org/ma/joeym and www.caringbridge.org/ma/carcar

Have a wonderful holiday and thank you for looking in on us. Take care.

Love and peace,
Diane and Girls

Friday, November 19, 2004 9:55 PM CST

Day +63

Sophia is doing very well. She had a MRI on Wednesday. I do not have the results yet. The MIBG showed no new areas of involvement however the one area remaining on her tibia is still there and has shown some increased uptake. The MRI will show more. I am very happy with the results but still concerned.

We have been very busy this week. Sophia had the MRI on Wednesday for which she was NPO(no food after midnight). The scan was not until 2:30. We went to clinic to get her port accessed first and she also had an infussion of pantamadine. During her infussion she started shaking. We all thought she was hypoglycemic(sp) and the nurse gave her some IV fluids with sugar. We went to MIR and she was still abit shakey and the anesthesiologist gave her more sugar. In recovery she ate a cheese sandwich and a slice of cheese and drank several ounces of milk. They checkedd her blood sugar and she was fine so they let us go. We were home by 6:00ish.

Thursday we went back to clinic for Cyclosporine levels and counts, which they couldn't do because I did not hold the morning dose of Cyclosporine. An attempted to draw blood from the broviac was unsuccessful and TPA was flushed into the line to be left in for 24 hours. She was given her weekly dose of IVIG during which Sophie's BP was elevated. A quick check by the oncologist and a dose of laysex was given. We were home by about 4:30. After we got home the nurse called and come to find out she was not saturated, she was dry and her magnesium was very low, which can cause shaking and high BP. She started oral magnesium and we had to go back to clinic today.

This morning Sophia had blood drawn at 10:15, mommy held the cyclosporine so the levels were done. Sophia needed IV magnesium and 3 hours of fluids that, for some reason, did not start until after 1. The TPA did not work and her broviac still did not draw so we were sent to exray for a dye study, contrast is infused through the broviac and through exray is watched to see where the contrast goes. They did find a clot and will discuss on Monday what to do next, I beleive they will take out the line. We have to go back to clinic on Monday and Sophia will be NPO incase she has to go to surgery to remove the broviac.

All in all it has been a busy week but compaired to what others have going on we are doing great. Thank you for looking in on us and all your thoughts and prayers. Please pray the MRI shows no change.

Love and Peace,
Diane and Girls

Sunday, November 14, 2004 10:08 PM CST

day +58

Sophia is doing great as is Olivia.

Saturday night I went to a fund raiser for the Neeley foundation. An organization established by Cam Neeley of the Boston Bruins. His foundation built the Neely House, a five star residence for cancer patients and their families at New England Medical Center and Floating Hospital for Children. The foundation is now accepting donations for the pediatric bone marrow transplant wing at Floating Hospital for Children. The fundraiser was a commedy show hosted by Dennis Leary, it was a very fun night. The best part of the evening was when one of the Red Sox came on stage with the world series trophey and Dennis Leary started an auction to anyone wanting to have a photo with the trophey. The bidding started at $25,000.oo, yes twentyfive thousand dollars. The bidding wen back and forth between 2 members of the audience; 30K to 35k to 40k. A voice from back a few rows yelled out 50K. Dennis then offered to all three parties to come up on stage and have the photo with the trophey and stay on stage to watch the show from on stage. They all went up, $150,000.00 for the Neeley foundation on to of what was raised for the night. It was so exciting. I wanted to run up on stage and thank them. I have stayed at the Neely House myself and it is so beautiful. Cam Neeley is a wonderful man.

Sophia has an MRI on Wednesday. I will let you all know what I find out.

Love and peace,
Diane and Girls

Friday, November 12, 2004 9:45 PM CST

day 56 (is that it? it feels like forever)

Platelets 208
hemeglobin 13.6
crit 39
white blood 8000
ANC 6400

Sophia is doing very well. We went to clinic today for IVIG, immune globulin. The preliminary reaults of her MIBG scan show no new areas of involvement. However, the tibia still has uptake, as I had expected. They will need to review an MRI to see if there is any change in the size of the leision on the tibia. MRI will is Wednesday 11/17. I did have hope for a clean scan but I knew there was no chance of that. The next MIBG will be in 6 weeks. If there is no change or progression we will most likely infuse donor lymphosytes. I will be asking for information on the EBV vaccine in Texas. If we do end up there I will post an explanation of what this new treatment is.

Olivia was very happy to see the snow today. We went out after dinner and made some mini snow people, an Olivia, Sophia and a mommy to be exact. They both enjoyed throwing snowballs at mommy. I think they will enjoy the winter.

Thank you for thinking of us this week. Your kind words are greatly appreciated. We are blessed, she is healthy, strong, happy and a fighter. Keep her and all others dealing with illness in your prayers.

love and peace
Diane and girls

Monday, November 8, 2004 9:42 PM CST

Day + 52

Hi and thank you for looking in on us. Sophia is doing well, packing on the pounds. She has never in her life been so chunky. I had to go out and buy her stretchpants and sweatpants as her jeans do not fit anymore. I hope she slows down after the prednisone stops, but those chunky cheeks are too cute.

Sophia and Olivia are doing great. Olivia got a hair cut, a short bob, on Saturday and she looks soo cute. I got a cut myself and Sophia had a great time watching. She stood with pensil and paper and drew a picture of mom and the hairdresser. She is so good with keeping the mask on indoors. The girls went to their dad's Saturday night and they had alot of fun.

We have the MIGB scan this week. The injection is tomorrow. Sophia started the SSKI today, it is easy to hide in her milk as long as she does not see me sneaking it in. They will try to draw off the broviac again tomorrow, if it does not work TPA will be added to the line for an hour to desolve the clot. I hope it doesn't work, I would love to loose the line. The line is no longer needed and it is in a horrible location. I am going to push to get it out.

Please pray Sophia's MIBG scan shows improvement from the last scan. She has been limited to the trials she can go on since she received the ALlogeneic Transplant. Many of the trials exclude Allo transplants and there are alot of chemo drugs she cannot have while on immunosupresive therapy. Keep us your thoughts on Wednesday, I will be in with her while the scan is taking place so I will hopefully be able to see the scan as it comes up on the computer screen. I am not a radiologist but the way MIBG lights up you can be pretty wure where the areas of involvement are. I will update as soon as I know.

Love and peace
Diane and Girls

Thursday, November 4, 2004 9:47 PM CST

Day +48

Sophia went to clinic today and received her weekly infusion of Immune Globulin. Olivia spent the day with Papa raking leaves and jumping into the pile, photos soon to come. She also had blood levels drawn and a quick check up. Her blood levels are great; crit 36, platelets 178, and I never got the ANC again. Her white blood cells were up abit but it is probably due to the prednisone. Sophia is now 97.6% male, her dad's bone marrow has just about taken over. They will check again in a few months and they are confident she will be 100% male. Please remember this is only the blood DNA, she is not going to need to shave when she gets older nor will her voice deepen with puberty. However, I am seeing alittle maleness in her personality; she is stubborn, cranky, obstinent, needy, demanding and hungry. It could just be the steroids.......or not. HA HA.

Sophia is no longer on IV cyclosporin. She is officially tuby free. She is very happy and so am I. 30 minutes has been shaved off bedtime preparation. Also I no longer have to chase her with an IV bag nor do I have to yell at her to remember her tuby before darting off to play. She is on oral cyclosporin and it is gross. She takes it in cooled hot chocolate and does not like it. It is recomended to take it with cranberry juice or OJ but she does not drink either so we have to be creative. Tonight she sipped hot chocolate and ate vanilla icecream and then sipped hot chocolate and ate more vanilla icecream until the hot chocolate was gone but it was gone. She is also alittle bit constipated. She is now on; celcept, cyclosporin, prednisone, acyclovir, miralax, and pepcid and they are all oral meds. I don't know how people keep all these meds straight. I am giving them at least a half hour apart, the entire morning and evening will be spent fighting with meds. Only one is three times a day so I only have one med in the afternoon. I only have to give the meds, poor Sophia has to take them.

On Monday we went to the unvailing of the FAO Schwartz Bear. It looks great in front of the hospital. The media was there as was Mayor Tom Menino. There was a school group singing songs and one of the teens from the clinic made a speech. The girls were on channel 5 news for a minute rocking to one of the songs. I have photos that I will put up once I get a chance.

Oh I almost forgot, I brought up to the BMT coordinator the possibility of loosing the double lumen broviac in Sophia's abdomen and she said we could discuss it. Wouldn't you know that today when they tried to draw off the line it ran dry, no blood. So we just might get the line taken out, Yeah!!!

Sophia is done for the week. She will go back to clinic on Tuesday for her MIBG injection and they will try to draw off the line again. I think it will be a no go. The MIBG is on Wednesday 11/10. Please pray she does well.

Thank you for taking the time to check in on us.

Love and peace,
Diane and Girls

Thursday, October 28, 2004 10:05 PM CDT

Day +41

Sophia is doing great. The onc took her off the IV nutrition today as she is eating us out of house and home due to the prednisone. I am sure the moms of the lukemia patients out there can understand about the steroid indused hungries. She eats 3 meals a day plus snacks between plus a before bed snack. Ppoor Olivia doesn't know what to make of it. She wants the same deal but doesn't understand why her sister can have icecream or chips or what ever she wants when ever she wants and she cannot. She should be more normal in a few weeks as long as the prednisone wean continues. She is expected to start oral cyclosporin next week so hopefully she will be off all IVs by then.

Clinic went very well today. Crit is 36, platelets are 215k and again I missed the ANC but they said all her counts were fine. "Howie Baby", the transplant specialist, sang Simon and Garfunkle and Jim Croce to Sophia today. She was not impressed. She received a dose of IVIG, immuneglobulin, today and came home exhausted. Before the IVIG she gets premeds, Tylenol and Vistoryl, I think that knocked her out. She spent the day either on my lap or laying on the couch like a lump. I expect tomorrow she will be back on her feet. THe onc is very satisfied with the amount of GVH she has, it is not too much but enough to proove there is "something" happening. I saw a boy who has been battling chronic GVH for over a year and he has shown to be refractory to all protocols for GVH (nonresponsive), hopefully we never go there. Sophia will be scanned on 11/11, MIBG, and 11/17, MRI, not happy with the waiting but she seems to be doing very well. I sometimes get rough with her to be sure that she is not in pain anywhere, she fully enjoys rough housing. I also drag her on long walks to assure myself that she is able to walk and run, the excersize is great for her but she does tucker out. I watch how she walks and runs and get freaked everytime she stumbles or asks to be held. I wanted to beg them to scan her next week but that would do no good, she needs anesthesia for the scans as they are almost 2 hours each and we are bound by the ansethesia schedule. She is not able to hold still and I am not able to fight with her to stay still, so we will wait.

Thank you so much for checking in on Sophia. Please keep her in your thoughts and pray the scans are improved.

love and peace,
Diane and girls

Monday, October 25, 2004 10:00 PM CDT

Day +38 and all is well.

Clinic today went well aside from the flu shot. Sophia screamed for 20 minutes in clinic and cried all the way out to the car, most of the way home and whimpered on the couch for about 1/2 hour. Then she was fine and happy again. Her platlets have been steadily increasing, 178 today. I glanced at the crit, I think it was 31 and everything els was fine. Sophia's GVH rash is still lurking but not enough to bother her. The Onc decreased the prednisone 1cc a day every 3 days rather than every 5 days. She has been doing well on the prednisone. She has not had any of the anger that I most kids get and wow has she been hungry. Her face is nice and pudgy, very cute. She has also gained 4lbs since transplant. The TPN has been decreased to 14 hours a day and maybe discontinued some time next week. She has about 12 days left on the IV cyclosporin so in the next 2 weeks she could be IV free. I am not looking forward to the oral cyclosporin I hear it is very nasty, a 23 year old in clinic said it almost made him sick to take it. Hopefully she does as well with it as she has with her other meds.

Thank you for looking in on us and keeping us in your prayers. Sophia is supposed to be scanned in the next 2 weeks, please pray they show improvement.

Love and peace,
Diane and girls

Friday, October 22, 2004 10:35 AM CDT

Day +35 and all is well
Sophia was in clinic yesterday and had a great check up and some Imunne Globulin, strengthens the immune system.. Her crit is 30, platelets 116K, I did not get her ANC but on Monday it was 3200. She has been placed on oral suspension prednisone, which she hates, for the GVHD of the skin. She has responded very well and her rash is almost gone. The have started weaning her off at a decrease of 1cc at a time. The Onc reduced her TPN to 18 hours a day so hopefully she starts to eat more. She is still on IV cyclosporin 24 hours a day which will hopefully stop in about 15 days. I expect her to start oral cyclosporin for approximately 20+ days, I hear that the oral cyclosporine is extremely nasty even the older kids throw it up.

She will be scanned in two weeks, not soon enough for me. I look at every bump in her head and wonder if that was the shape of her head or is it new. Everytime she has a pain from playing too rough I think she is having bone pain from a new leision. We all make ourselves crazy. I will let you know her scan schedule when I have it.

Please pray that the scans show no new disease. Also look in on JoeyM and Carl, links above. Joey just got home from CHOp and the MIBG treatment and he looks like a million bucks.

Olivia has started school at home and loves it. Sophia tags along and thinks she is in kindergarten too. They were so cute. Sophia was poking me and saying excuse me or teacher but not mom, it was like she forgot my name or I was no longer mom I was really teacher. Olivia read her first sentence, The fat cat sat in a mat. She was so proud. now she has shoe tieing, two wheel bike riding, skipping and reading under her belt. Medical school is next. The girls are going to their dads overnight on Saturday. I don't know what I am going to do wqith myself. I sleep with Sophia everynight so I can hear the pumps(well thats what I tell her everyone). I am all consumed with medicines and IVs all day. What am I going to do. I will be so crazy wondering if she is ok because we all know noone can do it as well as us moms. She will be fine and this will be good for her and Olivia, yes I know good for me too. Maybe I will go shopping and to a movie or sleep all day.

Thank you for looking in on us.

Love and peace,
Diane and girls

Sunday, October 17, 2004 10:36 PM CDT

Hey Its day 30

Sophia and Olivia are doing great. Olivia is such a great big sister. She helps Sophia with her IV bag and gets toys for her despite Sophia consantly dedmanding things from her. She is a sweet sweet girl.

I had to bring Sophia to the ER today. She has had a rash that I have been treating with nystatin cream but is is spreading. I was slathering Nystatin almost from head to toe. One call to the Stemcell Specialist, Howie Baby, and we were off to the ER. The ER nurse looked at the rash. The resident took a look see. Finally Howie Baby came down and ordered a dose of steroids for GVH (Graft Versus Host Disease). I have been waiting for something to shoe up. I hate for her to be uncomfortable but if she has GVHD then she will hopefully have graft versus tumor and her immune system will be working to kill those sickening cancer cells in her. Sophia has not complained of any burning or itching, apparently skin GVH is usually very uncomfortable. She is asleep now and doing very well. Olivia came with us to the ER and was very helpful. She conned Sophie into letting the doc look at her.

We have a clinic visit early in the AM to check blood and look at the rash. Hopefully we will not be gone all day.

Olivia is learning how to ride a 2 wheel bike without training wheels. SHe is so happy. I hope she gets it before the snow comes. Unfortunately Sophia does not like to spend too much time outside or without me right by her side so it can be a bit hard for Olivia. Thank God she is understanding.

Thank you for looking in on us. Please pray that this GVHD means the treatment is wouking for her. Also pray for all those fighting cancer. Look in on Joey,(link above) he just got home from CHOP and completed the MIBG treatment. Send some kind words their way.

Love and peace
Diane and Girls

Saturday, October 16, 2004 4:03 PM CDT

Hi Day +29 and all is well. crit 28, white 4.2 and platelets 98k. The platelets are low from the cellcept that she is taking 3 times a day.

Sophia has been very active with some periods of tiredness, I think its more nausea than tired. Both drugs she is on can make her nauseas. She has been cycled down to 2o hours of IV nutrition but still on 24 hours of IV cyclosporin. I hope she starts to ask for food. Her appetite should increase. Sophia pushes her IV around in her doll carriage, it is very cute. She has been taking pictures of everything and everyone. I am so glad I had her camera in transplant so I have a whole book of how it looked to her.

Sophia and Olivia had a visit from the Florida Grammy and Papa. They were very happy to see them. Unfortunately Great Nanna, Grammy Pat's mom, is in hospice care now so the visit wasn't just for fun. Please pray her passing is calm and easy.

Thank you for checking in on us. We will not be scanned for at least 20 days. The Onc wanted to wait for the cells to do their job. I am not crazy about the idea. I will continue to try and persuade them to scan her sooner. Please pray she will respond to this immune therapy and that she will not have any disease progression.
Please also pray for all those fighting cancer.


Love and peace
Diane and Girls

Sunday, October 10, 2004 9:22 AM CDT

Day 23

Hi everyone,

Sophia is doing wonderful. She is playful, energetic, bossy and demanding, Go Sophia. She is very happy to be home with her sister and rest of the family. She is eating alittle. I found lactose free WHOLE milk that she will drink, Lactose free Icecream that tastes good, lactose free cheese that she has yet to try and soy hotdogs we will see. She will be weaned soon from TPN so hopefully her appetite gets better. She has gained a couple of pounds, she actually looks chubby, epecially in the upper and lower cheeks. Thank you all for checking in. I will let you know how things are going on Tuesday, our next clinic day.

please remeber to check all the links above. Please pray this is the cure for Sophia. pray for all the others out there fighting cancer.

Take a moment to read the essay below. It was written by a young woman with Neuroblastoma for a scholarship and it is beautiful. It is a letter she wrote to herself from a friend she met in clinic who lost her battle to cancer a year ago. Anna I hope you don't mind my posting this it gives great insight into what we all need as moms watching our children live through this. God bless you Anna, you are beautiful.

The Letter I Would Like to Have Received from a Friend or

Relative During My Illness



By Anna O’Connor



To my dearest Anna Banana,



As I lay here about to go into my second stem cell transplant, I think of you my friend. I remember the first time I met you. You were a bald, meek, scraggly-looking teen who was curled up in a chair waiting for yet another chemotherapy to begin. I was thrilled to see you! You were the first fellow High School senior I had met since my relapse. I went over and introduced myself to you. I recall my first glance of your piercing eyes filled with determination and passion. I also remember how we became instant friends and immediately started telling each other jokes about effects of Benedryl that would make your best friend nervous to overhear.



Cancer distorts your concept of the most essential necessity in your life, the need for love. When confined to your bed you no longer have the opportunity to seek out relationships that will satisfy your innate longings. You are forced to wait in anticipation for those interactions to come to you. Be patient. God will bless you and send you friends that will love and support you through these trials. When I was first diagnosed with cancer my friendships all changed. Some of my alleged “best friends” deserted me. At first I added this to my list of reasons why I am the unluckiest person in the world, but soon I realized it was a blessing. The friends that remain loyal are reliable and will never hurt you so you know you can trust them and be completely at ease and honest with them.



I realize that relationships change and at times you will feel lonely. You will feel left out because you are away from your friends. But, through cancer, the definition of a good friend develops: a good friend is no longer someone who comes to your house after school to gossip and hang out. A good friend holds your hair back when you are sick and holds your hand when you shake from blood allergies. A good friend listens to you rant and rage as you search for meaning in a foggy abyss. Remember, one good friend is better than a million fake friends.



You know you will have to deal with the usual problems of being a teen, now with the new twist called cancer added. Your heart will pound when a guy walks in and says or does something that catches your attention. You, being the teenager girl whose hormones are starting to kick in, will want to flirt. But, no longer do you feel like the adorable, non-threatening girl. You are bald!!! Not only do you feel like crap, but you also feel ugly with your golden locks gone. Don’t worry about being bald, though. Let me tell you something, Anna, people will like the way you look. Anyway, people will love you most of all for your spirit. Any guy who does not see you for the wonderful person you are is not worth a moment of your precious time.



I understand the difficulty of just hanging out with friends. For one thing, you feel awful. In the last 24 hours you probably endured more pain than your friends have in their entire lives. Don’t dwell on this. Try not to complain about your discomfort; it is reasonable to let yourself escape for a couple of hours from the dark side of the cancer universe. I know the uncomfortable feeling of this foreign body that is not only constantly changing because of your age, but it is also deteriorating right before your eyes. Don’t give in to it; stay active if you can. Take walks. They provide great opportunities to enjoy the beauties of nature and exercise helps your body stay stronger so you’ll even feel better.



It was in good times, in between treatments, that I realized just how significantly my life had changed. In public places I was amazed at the impact my experiences had on people. When I went to school I was treated almost as a celebrity because people came rushing over to ask me how I was feeling. God will use you Anna to touch others merely by sharing your experiences on your website. The fact that hundreds of people are affected by my struggle encourages me to keep fighting. When you feel isolated from the world, remember all the people who are praying for you and the impact your existence has had. You will make a profound difference in the lives of others.



Make sure you don’t envy or hate anyone. When I was first diagnosed I was disdainful of those that complained of petty problems. Take people as they present themselves to you. You do not know the whole scope of their lives, and they might have a good reason for acting the way they do. They may have struggles or even mental problems you cannot comprehend. Picture them as curable by love and compassion. Never compare your cancer to their troubles, instead learn sympathy through others’ sympathy toward you.



Anna, I know they told you that it is almost impossible for you to live another year with all the cancer that is left, but you are not just a statistic. Whatever you do, don’t overanalyze the numbers or put your faith in statistics. You are a girl made in the image of God, and if God wants you to survive, you will definitely survive. I know that chemotherapy is not working for you, but enjoy each day and don’t worry about tomorrow. No one can know what will happen to them, therefore, don’t envy anyone who you view as more fortunate. You just never know how their life, or yours, will turn out. You have a wonderful, loving family and friends that will support you through all you do, so put your focus on them and the many ways you have been blessed.



No one ever says, “Congratulations on being one of the lucky few to receive cancer.” You don’t have to be happy to be sick. Cancer will educate you on the secrets of a life of love, but it does not demand constant cheer. We both know death; we have each faced it and conquered. Don’t store your fear in the bottom of your stomach. Take my advice and journal about your worries. When your family and friends don’t want to talk about the potential unpleasantness in your future, your journal will always linger, waiting for you to confide. Don’t hide anything, your diary does not judge and shudders at the thought of gossip.



You have a choice, Anna. I have met only two kinds of cancer patients. Half become very bitter towards their disease and dwell on their misfortune. Because they think the world revolves around them and owes them something, they become very depressed. The other half of cancer patients do not ignore the fact that they are dying, but choose to take advantage of all that is good in life. They genuinely care about others despite what is happening to them. When they become sad, they have a good long cry, but afterward they decide there is nothing they can do about the situation, so they pick themselves up and take advantage of the life left in them. Become that second person, Anna! One of the most important choices you will make in life is the attitude you adopt. This determines the kind of person you’ll be.



Remember to seize every moment of every day. Do not live life dwelling in the past; rather use your mistakes for future success. Even a day spent in agony can be viewed as another day to spend meeting nurses, talking with friends and family, and learning what matters most in life. I found that when I felt the worst, I woke up praising the Lord the most for allowing me to live another day. For the brief time I tasted remission, my joy faded for I was not forced to ponder over life. When you feel good, don’t always go to bed early; discard any self-consciousness and grab for memories that will sustain you through that next month of intense pain and isolation. Become aware of the simple pleasures in life: a cup of warm soup that slides down your throat warming you from the inside out, a breeze that screams vivacity and energy, filled with life. Relish every conversation. Listen to others and seek to pry new truth from their words. Hunt for every detail of life like a child. You will find an awe that starts at the bottom and fills your whole soul with a wonder that calms you and gives you an uncomplicated peace.



Anna, we’ve only just met, but in this horrid disease we have so much in common. I hope these words encourage you as you fight this battle. Live large. In spite of your distress you have so much to give to others and so much of life still to enjoy. Find those moments and relish them. Cherish what you have now. Someday we’ll celebrate remission together.



Love,



Elizabeth

Wednesday, October 6, 2004 11:14 PM CDT

Day + 20

Hello and thank you for stopping by. Sorry for the delay in updates, I attempted an update the other day and lost it some how. Yes, Sophia was discharged on Friday, October 1. We are still on the hospital campus at the Neeley House, a residence similar to The Ronald Mcdonald House. She has been doing very well. Sophia has been experiencing some minor diahria but other than that she is great. She is in a good mood all day and is ready to play. We were in clinic on Monday and Tuesday but had today off. Her counts have been fine; platelets 238, crit 30.5 and anc of 13k. I am alittle concerned about the platelet count, it was 299k the day she was discharged and yesterday it was down to 238. Also her white count is still up from the GCSF, usually when the GCSF is stopped the white counts come down by at least 50%. We will be seeing the transplant specialist tomorrow so I can hopefully get some answers. Of course I have been told by the nurses that she is fine and not to worry they are keeping an eye on things. I don’t think there is a cancer mom out there that can settle for that.

We have been very busy since we have received our walking papers. It started Friday evening with a quick teach from the homecare service on how to administer her IV meds. After packing up 3 + weeks of toys and prizes we finally got settled in a hepafiltered room, the fan is so loud I will probably hear it in my head for weeks. We start the morning with some “no more throw up medicine” oral zofran for nausea and wait about 20 minutes for it to take affect before giving her the “2 yucky white medicines”. Eache yucky white medicine is given about 15 minutes apart to keep her from throwing nit up and starting all over. She gets acrclovir and celcept, to me they both taste pretty good, and she fights all of it. After the medicines I have to do mouth care with the “yucky water”, hydrogen peroxide and sterile water, and the “yucky juice” nystatin to prevent thrush, also a fight. All is chased down by bottled water as she cannot drink tap. The morning is done and we either go over to clinic or take a walk or hit the small play room at the Neely house. She is very good, she will spend hours in the playroom with her mask on and she is the only child staying here so we have the place to ourselves. She has one afternoon med, celcept. Then we watch TV or play in our room. At about 5:30 she is finally asking for something to eat; waffles, rice, icecream(lactose free), and today is was chips(baked). After dinner it is time to switch over the IV. I always forget to take the TPN(IV Nutrition) out of the fridge so I have to put the bag in a warm water bath to warm it. I disconnect her from both lines so she can have a few minutes free while I get the new lines ready. She runs from one side of the room to the other yelling run run run. I have to add the Cyclosporin with a premeasured syringe and change the battery and I am done as the IV line is already primed. Once the TPN is warmed I add the vitamins which I have to draw from 2 viles and add to the bag with a syringe, I then spike the bag with the IV line and prime all the air our of it and of course the TPN bag itself has an air bubble in it so I have to rty and get that out as well because we al know how much mommy hates air bubbles. The I chase her down, which she thinks is hilarious, to flush the lines and hook her up again. Then before bed we have to do the medicines and mouth care all over again. I have tried everything to get her to take her medicine; reasoning with her, bribing her, playing the medicine game where I chase her and still have to fight when I catch her. Now I have learned the easiest way is to sneak up behind her and grab her chin and shove it in and hand her the water bottle. There is much less crying and she doesn’t have the anticipation of the “yucky medicine” coming. I wanted to get out of the hospital, why?? I had Jamie and Eileen to do all this for me. Hey guys come over for a visit, will ya??

She is such a great kid, when she gets something from the gift shop or the treasure box she always asks for Olivia. She made a few crafty things and always made on for Olivia. She made a picture she wanted to mail to her sister too. As much as she hates to admit it to Olivia’s face she loves her very much. They are very cute together, Sophia beats that girl up with love.

I watched Sophia sleep tonight, something I try not to do. I have mentioned many times here that I go about my day very well forgetting that she is so sick. It makes this so much easier, but once in a while when I watch her sleep I remember how fragile she is, how short our time together may be, how mad I am at this shitty disease. I hate that we are here instead of at our home in our beds living like a family. I hate that I have to see other beautiful, sweet kids with cancer and look into their frightened parents’ faces as they go about the day in clinic with transfusions and chemo infusions and testing and test results. You havge to forget where you are and what you are doing so you can make it through the day with out screaming. I went out for a walk to get a slice of pizza tonight and walked by a building that I walked into accidently looking for the Floating Hospital on Agust 14th 2002, the day she was diagnosed, and flashed back to that day. For the rest of my life I have flash backs to this nightmare. Forever I will be changed and not nessacerily for the better. Cherish life as though you know a little about what we cancer parents and families know because we never know what is out there for us.

Thank you for checking in on us. The outpouring of kind words when you read the news of our early release from the hospital has touched me. I cannot say how much I appreciate your guest book entries. Sophia will be scanned again soon, I hope to find out a schedule this week. Please pray that this treatment is working for her and that there is nothing going on with her blood. Also look in on Carl and Joey , their links are above, they are both coming to a new path in treatment and I am sure they could use some support.

Love and peace,
Diane and girls

Wednesday, September 29, 2004 9:08 PM CDT

Day +12

Well folks are you ready???
Platelets 270K(or 290, numbers this high does it matter)
Crit 29
ANC 1326

She has recovered. She has engrafted. She is showing 88% male in her blood. Which means her dad's stem cells have filled, almost completely, her marrow. She is soaring. She is fine. Some minor complaints about belly pain and still refuses to eat, but still she is fine. She is off all antibiotics, she has switched to oral acyclovir as an antiviral and is off morphine. Dare I say it? she may be discharged by Friday or Monday. I hope I am not jynxing, everyone knock on wood as you read this. What an amazing girl!! We will be staying in town at the Neely House(Floating Hospital's version of RMH) as my mom and dad have to prepare their house for Sophia's return. SHe will be going home on TPN(IV nutrition) and IV Cyclosporan, oral celcept and acyclovir but she is going home.

Thank you! Thank you! Thank you for all you thoughts and prayers for Sophia. She is the evidence of the power of prayer. Now we have to hope that this new bone marrow will produce an immunity to the remaining tumor cells and kill them.

Love and peace

Diane and Girls

Sunday, September 26, 2004 10:00 PM CDT

Day 9

Sophia is doing very well. She is such a good girl, she aks ever so sweetly "Mom, when will Maryjo and Jamie say it's time to go home?" Maryjo and Jamie are her favorite nurses that I amde them be the heavy when she firs asked if she could go home. I tell when she is better and doesn't need so many tubies. She just says "OK". She plays all day, full of energy. Her crit dropped to 24.9 yesterday but went up today so she did not require any transfussions and her platelets have come up from 30k so she is doing well.

I do not understand how this is all going to work. She has been given a reduced intensity transplant so her counts were not heavily hit. Actually she never hit bottom at all but the new stem cells will be able to grow into her marrow. i do not understand at all. I keep asking how but I do not understand the answer. She is on immunosuppressive therapy so I guess that will enable the new cells to grow in her marrow but I guess I need to leave the doctor stuff up to the doctors and just stick to the mommy stuff for now.

Sophia is being monitored for veno occlusive disease (sp). It is something that can occur in the liver that basically causes the arteries in the liver to clot, not good from what I understand. The risk for VOD is from I beleive day 6 to day 14. Also they will also start watching for pulmonary hemorage which can occur somewhere around day 14 or- 3 or 4 days again not so good. Then there is the GVH. Waiting and watching.

I am happy to report that Floating Hospital for CHildren has won the FAO Schwartz Bear. The three ton, twelve foot statue will be on display in front of the hospital so anyone visiting the city may see it. This is a tremendous thing for the hospital. People will know where we are. We all were so surprised when the news came in, we all thought the Children's Hospital at Dana Farber would win the bear, as they receive so much from the public. Not to sound nasty but it is about time we got some attention in this city. It is the oldest children's hospital in the city.

Thank you to all who voted that Floating get the Bear. Also for looking in on us, praying for her and our family. Please keep in mind all those battling this disgusting disease, cancer.

Love and peace,
Diane and girls

Wednesday, September 22, 2004 9:23 PM CDT

Sophia's Day +5

Sophia has been doing very well. She has not eaten in the past few days, since she has been placed on IV nutrition she is not hungry. It is ok that she is not eating, the docs want her gut to be clear incase she gets GVH. GVH primarily hits the gut and causes severe diahria. She has been spiking fever over the last 24 hours but that is to be expected in transplant. All of her IV lines have been cultured and she is on another anibiotic. She has some smll mouth sores and she is getting IV morphine before mouth care so it is not as uncomfortable, although there is nothing that will help her with nystatin rinse she just hates it. Her counts are slowly coming down, platelets were in the 50s today and her crit was 27 and the ANC was 640. We are now just waiting for engraftment.

She has been playing off and on. She is tired and will play on the excersize mat they gave us and then mozy back to her bed with me in tow. I have become her bed buddy. She loves to cuddel. It is such a change from her last 2 transplants. Back then she was so angry from the drugs she was on, it was miserable. This time I am not in such a rush to get out of the room as I was last time. She is actually very happy and cooperative. She does have her moments but she is entitled but for the most part we are having fun. Olivia has been in several times to visit and she is so happy to see her sister and dad. I bought her an instamatic camera and she has been taking pictures of everyone and everything, she is having a blast. The film is going to break me but that is fine she loves it and I see this experience throught her perspective. But I do realize this is the calm before the storm but I will take it. When the Onc comes in to check her and we all sit and discuss our like and dislikes regauding seafood rather than the patient we know things are doing ok.

Plaese pray this is the last step for towards a cure. Also please look in on Carl and his family, they have had some not so good news aout his progress and are at a point where they have make decisions based on nothing. Please pray for Carl as well as all the others stricken with cancer.

Love and peace,
Diane and Girls

Saturday, September 18, 2004 8:36 PM CDT

Day 0 update 9/17.

Sophia's day 0 went OK. She was NPO after midnight on Thursday and all IV meds stopped, including antinausea. This is so they can narrow down any reaction she may have to the stem cell infussion. She was in a good mood in the AM until mouth care and she became nauseas. SHe vomitted a short time before the stem cell infussion and was given Zofran. The stem cell infussion began at 10:30 am and was completed by 11:45 AM, in that time she received just under 600 cc of cells. At the sart of the infussion she was fine and in good spirits after about 1/2 hour she began to vomitting again which contued into the night. Sophia also complained of eye pain. She cried and cried. The Stem Cell specialist could not explain the pain. She was given atevan for nausea and to lower her blood pressure as it was escalating. She was given decadron for nausea and lasex to help her put out some fluids. HEr blood pressure continued to go up so she was given another drug to help bring it down and it finally did creep back down. Sophia then spiked a fever in the evening and started on antibiotics and tylenol and her the nurse did blood cultures on all her lines, which so far are all negative. The nausea she experienced could have been an after effect from the ATG and the headache or eye pain could have been from the IVIG (IV Immune Globulin) she received Thursday evening. She also received a blood transfussion on Thursday evening which in combination with the amount of fluid in her stem cell infussion explained the high blood pressure. She slepth through the night without any problems and woke up in a good mood.

Day +1 9/18

Sophie woke up feeling more herself, giggly and ready to play. She did look a bit pink today too but not itchy, not sure why. We did a sponge bath and she helped the nurse change the bed. She helped me do a puzzle and ate some chicken rice soup. Towards lunchtime she began to wind down. She was very tired until the child life specialist came to play and then she up and ready to go. I got to go out to see DR Phill speak at the Wang Center in Boston, some of the moms were given tickets to the show. It was OK, he sounded more like a preacher but it was fun. While I was out Grammy came in to relieve the childlife specialist and the daddy and Olivia came in to see Sophia. WHen I got back the room was a mess which means she had some fun but she was ready to go to sleep when daddy left. She asked for more soup but only to a few bites and fell asleep watching Aladin.

Sophia started TPN today, IV nutrition, to slow down her appetite incase she gets a bad case of gut GVH. She started up all IV and oral meds again; cephepine, cyclosporin, zofran, vistoryl, phenergan, nystatin, actigol, and new to the mix celcept(immunosupresent), as well as TPN. No wonder she is tired. I expect her to continue to feel yucky and worse before she is feeling better.

Thank you all so much for checking in. I will do my best to update you on her condition every day. We are praying this is what is going cure her an I know you are too.

Love and peace,
Diane and Girls

Thursday, September 16, 2004 10:54 PM CDT

Day -1

Thank you all so much for your kind words of encouragement in the guestbook as well as private emails.

Sophia is doing very well. I seem that the night she was vomiting and experiencing high fevers was a fluke, it never happened again. Thank goodness. She ahs been doing better with her mouth care, she knows sha has no choice and she gets a prize. She has been taken off her oral bactrum and started IV pantamadine and that is only once a month. SHe has started IV cyclosporin, an immunospresent, running 24 hours a day for 50 days. She will start another oral drug called celcept I think on Saturday also an immunosupresent. She received her first transplant transfussion this evening, her crit was only 22 so they gave her blood. She should be off the walls tomorrow.

Sophia receives Stem Cells from her dad tomorrow which were harvested today over a 5 hour sit with a pherisis machine. A great big bag was collected and she is expected to get them all. She is not allowed to eat after midnight tonight just incase something happens they want her belly to be empty. I beleive she will only get zofran as a premed for the stemcell infussion as there isn't any preservtive, DMSO, that would make her ill. Then we wait. In her auto transplants the day after her stemcell infussion was bad and it all went dwnhill form there. I am sure this is how it will go for her. We will sit and wait, through the 0 counts with blood and platelet transfussions and mouth sores through the gut, for the engraftment and the GVH if any. It is expected 14 to 30 days for engraftmant. I am hopefull she will do well.

She has been having fun with some of the residents and med students. They want to come in and play with her. She is so good this transplant, before she was just so angry no one wanted to go near her. She has people visiting all day.

I have to get to bed it is very late. Pray this is it for her and that the new cells take over and kill the last bit of cancer in her body.

Love and peace,

Diane and girls

Monday, September 13, 2004 10:18 PM CDT

Hello everyone,

As always I thank you for checking in on us. Sophia has made an easy transition into isolation. She completed 5 days of Fluderabine as well as 2 days of Busulfin and has done very well, a few hickups and some burps but that is it.

Today was the start of ATG. A 6 hour infussion. She had done well all day. She was very playful and flirted and awful lot with a new resident, Dr Phil (no relation, haha). They read together and played picnic. Carol from Childlife came up to play with Sophia for a while so I could get lunch. She played Candyland with Carol. About 10 minutes after the ATG finished she got very lethargic, fever. 15 minutes after that she complained of belly pain and climbed into my lap so nausea meds were hung, too late. Poor Sophia lost her lunch all over us both. She was more upset that she dirtied our clothes than the fact that she had just vommitted. Sophia had a shower and we started getting ready for bed. She perked up in the shower but was a lump in her bed, not like her. I took the temp again and it was 103. After 20 minutes of pleading and crying she took her tylenol(you would think they would be able to come up with an IV form so sick kids wouldn't have to another med PO). After a horrific broviac dressing change she finally went to sleep. I went for a walk as the nurse was still planning on another mouth care and had 2 more oral meds to get down.

I tend to leave for the 4 mouth care treatments every day. I have to hold her down for so many things and force so many oral meds down her that I cannot handle mouth care. I know it is bad now but once the mouth sores start she will be heard screaming down the hall. I wait outside the room or I annot bear it I go for a walk and when I return she is usually safely cuddled in one of the nurses' laps. She gets over it quick. Taht was what i did for the last 2 transplants. This time she can tell when I am getting up to leave for mouth care, I have no idea how she knows but she does. She will cling to me and beg me not to go. I always make up some errand to run but I am usually close by. She is not used to the mouth care so regimented. At home we would do a few days of mouth care but when the counts went back up I would go down to 2 tmes a day and with toothepaste so she would cooperate. This transplant they are using a drug called Nystatin with her mouth care and she hates it, but they get it done and I think they are able to get it done better without me there because I cannot hold her as well as the nurses do.

I had a few surprises going into isolation on Friday. She is on 4 oral meds every day; Bactrum, Folic Acid, Nystatin, and one other that I cannot seem to remember the name now it starts with A. The Bactrum is for a specific type of pneumonia, very dangerous. Folic Acid is just a supliment, I forgot to ask what it helps. Nystatin is for Thrush, a bacteria in the mouth yeast I think. Finally the other, Actigol, (I remembered) is to prevent gaulstones. She hates oral meds even the ones that taste like candy she hates. If they could make them all taste like milk we would be all set.

She has been having fun in that little room. Everynight she gets a new toy for cooperating as much as she can and getting all her "stuff" done and that makes her happy. She is is great spirits, I am wouking hard on keeping it that way. Olivia and Daddy came up yesterday they had fun. Grammy came in on Saturday so I could ride the 50 mile Cycle For Life, ouch yes 50 miles (well 48 miles really). I had fun. Maybe next year both Olivia and Sophia will be waitng at the finish line for mom.

Thank you for your thoughts and prayers.

Love and peace,
Diane and girls

Wednesday, September 8, 2004 3:29 PM CDT

Sophia started chemo on Teusday and so far so good. She will be admitted to the transplant romm, isolation, on Friday. I will keep you posted on her progress. Please email me if you are interested in purchasing the cookbook created in honor of Sophia. It is a beautiful book.

S is for the way you save my life

T is for the T-Cells that will grow

E is for everyone who prays for me

M is for my mommy who loves me

C is for the cells that grow and grow

E is for the cells that are engrafting

L is for the leucocytes that fight infection

L is for the love from my daddy

Thank you for checking in.

Love and peace
Diane and Girls

Monday, September 6, 2004 9:43 PM CDT

Sophia had the best birthday. She was home. Sophia Had her freinds and family over for a quick party with a Carebear cake. The girls had a great day.

Sophia goes in to hopefully start preconditioning for transplant. She will start with 5 days of Fludaribine which is given over 1 hour out patient. On day -5 she will start Busulfan I beleive over 3 hours for 2 days and will start isolation. On day -6 she will start an agent called ATG over 4 hours for 4 days which I think is an acronym for Anti T-cell Globulin but I could be way off. ATG is to interrupt the production of T-Cells. Sophia's day 0 stemcell day will be Friday September 17. She will start several IV antibiotics and possibly an antifungal and an antiviral. She will also start immunosuppresent therapy consisting of cyclosporin and cellcept. The cyclosporin will be given IV and then orally for 70 days and the cellcept is oral for 6 months. If I am repeating this info I am sorry. I am also sorry for the spelling errors some of the drugs I am not wure how to spell them.

I have too many toys for Sophia while she is in isolation; books, paints, markers, paper, dolls, games, kitchen stuff and fake food, baby care items, etc etc. I hope she will have alot of fun, as much as you can have isolated in a hospital room.

Thank you for checking in on us. Please pray for Sophia as we move on to this next phase of treatment. She will be in danger of life threatening infection for awhile. Please pray that she does not experience too much discomfort from GVH(Graft Virsus Host Disease). Also and most important pray that she is cured, I know this is a lot to ask but she will be very tired from this next step and if she should have disease progression we will be limited in how we can treat her if at all.

Love and peace,
Diane and Girls

By the way the cookbooks are in and they are beautiful. send an email if you want to purchase one. All proceeds benefit Sophia's fund at Floating Hospital to help other families dealing with cancer.

Wednesday, September 1, 2004 1:54 PM CDT

HAPPY BRITHDAY SOPHIA

Looking forward to a great day!!!
By the way the cookbooks are in and they are beautiful. send an email if you want to purchase one. All proceeds benefit Sophia's fund at Floating Hospital to help other families dealing with cancer.


Love and peace,
Diane and girls

Monday, August 30, 2004 3:33 PM CDT

Hi everyone,
Unfortunately Sophia had to stop the preconditioning chemotherapy today due to a possible infection at the sight where her broviac (IV Line) exits her abdomen. She will be on two days of IV antibiotics and a 5 day cycle of oral antibiotics. So we relax for the moment. I will find out tomorrow, hopefully, when she is to continue. Thank you for all your kind and inspirational words. Keep the positive energy and prayers coming. Asside from that she is doing fine. Active is not the word. Sophia and Olivia tore the clinic apart today. I think that the area in which her broviac exits is a very bad area, it lies right on a bend in her belly. Her underpants and her pants hit right there too, I am not sure we will ever have a dry area. She has a tiny amount of seepage but for the most part it is dry. We will see.

Thank you,
Diane and Girls

By the way the cookbooks are in and they are beautiful. send an email if you want to purchase one. All proceeds benefit Sophia's fund at Floating Hospital to help other families dealing with cancer.

Friday, August 27, 2004 7:46 AM CDT

Sophia has spent the last 2 weeks preparing for transplant. She has had the full battery of scans and has actually shown regression in all areas of involvement on her MRI. The CT, and Bone Marrow biopsy are negative for disease and the MIBG shows only one small area of mild uptake in her ankle. She has had dental, hearing and pulmonary functions and has done well with all. Her hearing has deteriorated from her last evaluation but that was to be expected. She had a central IV line placed on Monday which was expected to go in her chest however the area was impassable and it was placed in the groin (femeral artery) and tunneled under her skin out through her belly.

We have been very busy trying to make sure the girls are having fun together. We spent a rainy few days on the Cape but they had fun at the beach anyway. Sophia had an early birthday party at her dad's with Dora The Explorer, Barbi, and the worlds best clown, Rhami Salami. The clown told Sophia he had a secret forher and pulled off his wig and wouldn't you know it he was bald. She was so happy, she laughed and toughed his head. She received alot of toys and crafty things for transplant. Thank you everyone for making it a special day for the whole family. The girls will spend the weekend at their dad's to give me a weekend off before being isolated with Sophia for the 4-6 weeks. We are hoping that she is not isolated for that long but one never knows.

Sophia starts Chemotherapy; Fluderabine, Busulfin and ATG (an antibody to T-Cells derived from, oh yes I said a HORSE), on Monday in preparation for Ben's bonemarrow 10 days later. She has been doing very well and is very healthy right now. She is expected to do very well with this next proceedure. After transplant she will remain on immunosupresant therapy for 180 days, yes that is 6 months, it will be a long winter. Everywhere we go she will have to wear a mask. Please pray for her as she enters this next phase of treatment and that it is her means to a cure. Thank you for always thinking of us.

Love and peace,
Diane and girls

Monday, August 16, 2004 7:49 AM CDT

I hope everyone faired the storm well. We had rain most of the day on Sunday so we had to cancell Sophia's birthday party. We felt it would be better to have her birthday party outdoors so more kids can come. It has been rescheduled to this Sunday.

Sophia has been doing very well. We do not have to go to clinic until tomorrow at which time she will have a CT scan and counts. Sophia's dad is scheduled for his pre bone marrow donation (is that what it is called??) checkup. He has the full workover done. He will receive a perscription for GCSF, the same shots that Sophia has when her counts are down. The shots will stimulate the growth of stem sells that they will then harvest from him via pheresis. It is basically the same process used for Autologus stem cell harvesting. Sophia will start a 10 day chemo cycle on August 30, day -10. Ben will be harvested on her day -1 and she will get the cells on day 0. We then wait for engraftment. She is expected to be isolated in the hospital for at least 6-8 weeks. I have not had the pre bone marrow transplant "what to expect" meeting with the transplant coordinator but I expect to be very horrified, I know I was at the previous 2 meetings a year and half ago.

We have not received any results from her scans last week, I hope to hear on the MIBG today. The bone marrow biopsey can take up to a week. I will let you know.

Please pray the MIBG is improved. Above there is a link for Carl Robinson if you have a monent to check on him please do as he has had a set back. Recent scans have shown disease progression. They will be starting a new trial soon. Thank you so much for checking in on us.

Love and peace,
Diane and Girls

Thursday, August 12, 2004 10:32 PM CDT

Hi and welcome back.
Sophia is being prepared for her Allo Transplant. Over the next few weeks she will have MIBG(done yesterday), CT, MRI, Hearing, Eccocardiogram, Pulmonary functions, Dental, Bone Marrow biopsey and asperate(done today) and placement of a double lumen pharesis catheter in her chest. The reason for the pheresis catheter is the anticipation of possible chronic Graft Vs Host disease. Floating Hospital for Children, Sophia's Hospital, is one of the few hospitals in the country that will be set up to perform photopheresis on pediatric patients as small as Sophia. Photopheresis has been seen to be an effective treatment for Chronic Graft VS Host disease. Sophia will hopefully not need this treatment although Graft VS Host disease is what we are hoping will cure her, Graft VS Neuroblastoma, Chronic Graft VS Host can be very damaging if not fatal.

Sophia is doing very well, recovering slow but nicely. Shae has just completed 2 rounds of very heavy hitting chemo. We attempted the Dental exam on Tuesday but her ANC and Platelets were abit too low. She also was turned away from her pulmonary function test because Pulmonology said she was too young. Sophia's Doc is going to push for it as she has had several drugs that can cause damage to the lining of the lungs and GVH (graft vs Host) can often effect the lungs, is how I think I understand it. MIBG and the bone marrow have been done. She has done very well with the anesthesia and not eating for both procedures. I am hoping to have a few days off to take her to the beach again. Olivia and Sophia have such an awesome time at the beach.

I will let you know how the results of her MIBG as soon as I find out. She has only one hot spot that showed on her last MIBG on her tibia. Please pray that she has no new spots and the ones that have improved remain the same, but also the one spot on her tibia has resolved as well. I need her to be as close to no evidence of disease as possible. I am so scared of what I know in my heart is the right thing to have her go into it with enough disease to show on an MIBG is frightening. Her last Bone Marrow from January were clean, pray they remain that way. The MRI I am fairly certain will remain the same, little or no improvement. I am not as concerned about the MRI as I was before as it only shows something abnormal not that it may be live or active cells. The disease inher leg could be dead and will take a while to absorb, keep in mind that Neuroblastoma is undetectable by MIBG under 800 billion cells so . . .

Mom is trying very hard to keep it together. I am extremely forgetful these days. I have asked for her evaluation schedule at least 3 times. This is not like me at all anything that concerns Sophia I have been very very organized and able to keep straight. I often remind the nurses about what is happening with her, now I am not as organized. I am spinning out, unravelling. I have been having difficulty eating and sleeping. It is going to get worse before it gets better but it will get better. I have had too much time to think and worry about the upcoming transplant once she gets into transplant I will not have anything to be anxious about because it will be here and I will not have time to wonder "what if". One of the benefits of this worrying, I will probably loose those 9 lbs I have been wanting to loose with all the up and down stairs I have been doing because I go up stairs to get something and forget what I want and go back down and then I remember and go back up but by the time I get there again I forget. You have to laugh though. Sophia is helping me get through, she is so strong. Olivia is such a help too. I have been rpeparing them both for the big day. I have been reminding them about it and they seem to be OK.

On a happy note Sophia's dad is having an early birthday party for her. Her Birthday is September 1 and she will 4 years old, can I still call her my baby at 4 I think so. On Sunday family and friends will get together and celebrate Sophia. I am certain they both will have a great time.

Please keep us in your thoughts. Please pray these scans tell us good news, that Olivia be strong and able to handle mom and Sophia being gone for another long period of time, that this allo transplant saves her life. Thank you for stopping in and checking up on us. Please also remember to sign in the guestbook, I so appreciate your kind and inspiring entries.

Love and peace,
Diane

Friday, August 6, 2004 11:48 PM CDT

Hi everyone and thank you for looking in on us. I am sorry I have been delayed with updates bu things are getting a bit more difficult for me these days, more about that later.

Two Neuroblastoma fighters lost their battle this week. First most of you know, Alexandra Scott. Most of us living with monster really thought she would beat this disease. Her family is an inspiration; courage, strength and the ability not to give up. http://www.caringbridge.org/page/alexscott Also young Simon Vodosek, a boy I met at the Ronald Mcdonald House in NYC. http://www.simonsplace.org/

Sophia went to clinc on Monday and her counts were great so Olivia asked Sophia's nurse, Maryjo, if we could go to the beach for a few days and she said yes. The girls we very happy and we left straight from the hospital with a quick pit stop at home to get Sophias GCSF as her ANC dropped so we had to restart the shots. We spent 3 days at the beach in York ME with auntie Terry, uncle Mark and kids. The girls had a blast. They ran up and down the beach, built sand castles and a giant Bailey dog(our mini daschound), buried Olivia in the sand, jumped the waves, flew a kite, chased their cousins and screamed yelled and laughed. I yelled at another mom at the beach and it felt so gooood. We were playing in the water at the waters edge and there were two moms chatting while their toddlers hung out having fun. A five year old boy came running up to one of the moms telling her he had to pee. His mom told him to shush and said she had a secret to tell him and proceeded to bring him ou to the water. I immediately glared at the other mom and she asked me what my problem was. I blasted her, told her that it was disgusting. She had the audacity to say that I had my way of mothering and she had hers. Then pointed out Sophia, who was playing in the water not 20 feet away, and told her she was a cancer patient and was playing in the same water taht her friend's son just peed in. She then told me not to tell her but to tell the mom. So I marched my way out to the water where her son was being showed how to be an animal and told her she was disgusting. I again pointed out that my daughter with cancer was playing in the same water she taught her son to piss in. She said she was sorry and yelled at her again, she wasn't sorry she did it she was sorry she was caught and I yelled at her. I told her again she was disgusting. My kids would never ever pee outside. Otherwise the trip was peiceless. I will try and get photos up this weekend My dads computer is not set up to edit photos so hopefully I will get to another computer this weekend.

Sophia had a clinic visit yesterday and she was low on platelets and redcells. We were there long enough to get platelets and Olivia got sick so we had to leave. I was so afraid that she would get some of the other kids sick. She never got sick again so I think it was something she ate, the chocolate pudding or the tootsie pop or the popcorn combined with the pink lemonade. Olivia has reflux and I need to be more careful of what she eats, she had alot of dairy too in between all the junk. Olivia went off to her dads and Sophia went back to clinic today for her redcells. Olivia went to her friend's,Heather, today and had a blast but she told me when I got there that she awas so afraid to go there because she did not want to get sick there. The poor kid, I have turned her into such a worrier.

As transplant is looming I am feeling very angry, scared and threatened. I feel like I am backed up against a wall garding Sophia with a huge hand coming down to take her from me and there is no way out. I am so pissed. I went Sophia's Dr with some concerns about the transplant and the future with alot of what ifs and info from the conference. He was very deffensive, I am quite sure he thought I was questioning his ability. Now I am very uncomfortable going into clinic, once again. As far as I am concerned when your are looking at the life and death of your child, no matter what your frame of maind is, you should be treated with kit gloves not met with arrogance. Stupid, socially inept doctors.

Today I went to parent's group and the mom was there that I was asked no to speak to a few months ago was there as well. Usually the parent's are asked individually how their children are doing and most of them were but it was very superficial and Sophia was not brought up and when I tried to bring up some issues the subject was subtly cut. We talked about my trip to the beach breifly to help another mom decide about where to go for a family trip. Later in the session a reference to trying to get back to "what really counts" making everyday count because we never know how much time we really have and our trip to the beach was an example used as we are in a scary place and that very clearly upset me. The subject immediately changed to something more superficial again and my feelings were never addressed, I walked out before the session was over. Now I know this is childish and I am hyper, hyper sensative but there was definitely avoidance of Sophia's situation. I am going to have some scary times coming up that i am going to want to talk to other moms about and am i going to be stiffled when ever this other mom is in group because she can't handle that fact the Sophia relapsed. Yes it is scary for her, her son just finished treatment for the same disease as Sophia but if she can't handle it she should stay away. I am not going to expect too much rational thinking on my part over the next few months and yes people are going to have to bare with me. This sucks soo bad.

I got news of a 12 year old boy from clinc with a brain tumor that lost his battle today. How selfish am I getting angry about something so minor while another mom held her son as he took his last breath. This world is so sick. No one could possibly understand unless you are right there everyday.

I am thankful that my daughter is in good health, that we are able to go just about anywhere and do anything we want. I drink her in, smell her wonderful aroma, hear her beautiful voice. These days are gifts that I will have forever. I am thankful to have had these 2 years with her that I know very well that I may not have had. Now we need a miracle so I can have 50 more years to cherish. August 14 will be 2 years from diagnosis which had she been still in remission would have been quite an accomplishment. Now it is just another day full of horror among many that I have put away forever.

Sophia has scans next week. Please please pray that she has a clear MIBG. I know her MRI will most likely be unchanged. Boney disease usually takes a while to heal, the cells could be dead but just waiting to be absorded and replaced with healthy cells. Please pray that the decisions we make for Sophia are the right ones. No one knows how to treat these kids and so many do not make it. Treatment options vary so much from hospital to hospital and the Doctors disagree even within the same hospital. It is so hard to decide what is right. I am trying to stay positive but I am scared. I work very hard on forgetting that she is so sick and she makes it easier for me to do that. She is a powerhouse. It is getting harder for me to do the updates as well. I live very comfy in selfinduced denial. I will let you all know how the scans look next week. The girls are going to their dads for the weekend and i am hopefully going to get some much needed rest and hopefully get the photos up.

Love and peace,
Diane and girls

Friday, August 6, 2004 11:41 AM CDT

I will update tonight.

Monday, July 26, 2004 2:41 PM CDT

Hi every one, I am so sorry it took so long to update. Sophia came home from the Hospital last Maonday and is doing fine. She had a clinic visit today and required a platelet transfussion. She has 0 ANC but otherwise doing well. She is in fairly good spirits and as spunky as ever. Speaking of spunky, Sophia punched her doctor last Thursday in a very sensative area(hehe). It was not at all funny. She went to clinic with her Dad so unfortunately I was no there to witness it.

I spent the weekend at the Neuroblastoma Conference in Chicago, Ill. and had a great time. It was so nice to have met all the people I have been corresponding with over the last year and half. I learned a great deal about this horrible disease and about new treatments. I am now more confused about her next step in treatment. All the Doctors present at the conf were dead against her receiving an Allo transplant. I have some more research to do.

Please pray that the decisions we make about Sophia's treatment are the right ones. Also please pray that her scans show improvement. There are many parents now questioning what should be done to treat their children, please pray we can all receive comfort in the decisions we have made. Please click on the link above the other "kids Pages" who are battling this disease to offer your support.

Love and peace,
Diane and Girls

Sunday, July 18, 2004 9:14 PM CDT

Sophia was admitted on Thursday to start the prehydration for chemo. She has been tolerating it very well. Yesterday she wasn't feeling well so her onc changed her antiemetics to cover her. Today was a better day. Aside from the decadron crankies, she is doing well. Today she got it in her head that she wanted a ride on toy, much too small for her, that another baby was using. She screamed for more than 45 minutes. We had to go back to the room with the door shut and she could be heard all the way down to the nurses station. She reminded me of those days back when treatment first started and she would do that everyday. She would have a screaming fit that would last up to an hour over my sitting down when she wanted me to stand or I put in a movie that she requested but decided she did not want. It is a good thing we are in the last room on the ward and we have no neighbors.

We should be going home tomorrow afternoon. She has a 19 hour infusion of Mesna, to protect her bladder from the toxicities in the chemo, and a blood transfusion as she is now anemic. She will have a scan in 4 weeks and then I will know more about her transplant.

Thank you all for looking in on us and your thoughts and prayers. Please Please go to the link above for the FAO Schwartz Bear to go to the FLOATOING HOSPITAL. Thank you.

Love and peace
Diane and Girls

Thursday, July 15, 2004 10:54 AM CDT

Hi sorry I forgot to update you on Sophia. Sophia's ANC(white counts) were not high enough to start chemo on Monday. Just as well I wanted her to recover longer before starting the next round. We are checking counts today and most likely will start today. I will update later today where we are. Please Plesae go to the link above for the FAO Schwartz Bear to go to the FLOATOING HOSPITAL. Tahnk you.

Please keep us in your thoughts as we beging, hopefully, her final round before transplant. We need her to be close to NED as possible before t=going to Transplant.

Love and Peace
Diane and Girls

Sunday, July 11, 2004 10:24 PM CDT

Another summer week has ended. We are coming closer to the cold weather. Sophie and Olivia had a great weekend. Saturday the girls went to a Birthday party for one of my best friend's children. Sophie was great, there was a pool and of corse Sophie couldn't swim but she had fun anyway. There was a moonwalk and when Sophie wanted to jump all the kids got out and let Sophie and mom in to bounce safely. Sunday the girls had a fun day at their dad's.

Sophia is expected to start ICE tomorrow but her platlets were low on Friday, 39K, so she may not be ready. I won't be sad if she waits until Wednesday to start. She will have had a few more days to recover and her blood will be stronger.

On Friday night I did the most difficult thing I have had to do in a long time, possibly in my life. I went to a wake for a 2 year old boy who succumbed to cancer. Since Sophia's diagnosis I had wished I could put her back to my breast and nurse her and make her all better. I breast fed both of my children for twelve months and the feeling of comfort that comes from breast feeding is intense. I know in my head that it would not have made her better but in my heart... When I saw that baby lying "asleep" in his little white bed I wanted to wake him and give him to his mother so she could put him to her breast and nurse him. Why can't we just kiss their booboo and make it all better? This is the hardest thing for moms, I have said this so many times here before, where the hell is the damn booboo so we can make it all better?!? How do we make our families all better? We will never be all better no matter what happens. When the pain is gone, the medicine is done, the booboo is still there on the entire family and always will be.

Sophia will be scanned four weeks after the start of chemo. Please pray that the scan is clear. When she recovers from this round of chemo I plan to bring the girls back to the beach, hopefully for a few days.

Thank you for checking in on us and praying for us.

Love and peace
Diane and girls

Thursday, July 8, 2004 10:57 PM CDT

Thank you for coming back to visit with us. We are all great!!!(knock, Knock)Sophia and Olivia spent the day at the beach with Grammy, Auntie Terry and cousins Katie and Sarah and mommy. They had a BLAST. Sophia and Olivia enjoy the beach sooooo much. I wish we lived closer to the beach.

Sophia will go to clinic tomorrow for a check up and counts. she is expected to have a second round of ICE(ifosfomide,cytoxan and etoposide). The MRI is unchanged for the last MRI. This is good?!? According to her onc if the sights are the same the cancer is not growing. i want to see regression. Too much to ask, bone disease is very hard to irradicate and it doesn't just go away. Dead cells calcify and have to be replaced by healthy cells, this process takes time. They would not give her the MIBG scan as it is a nuclear scan and is radioactive. She will have the MIBG afther this next round, hopefully there is no uptake in any areas and we can move towards transplant.

It will be a solomn day in clinic tomorrow. One of Sophia's friends passed away on Wednesday. He had a very short, very rough road and he fought so hard. He did not have Neuroblastoma, but his was just as rare and aggressive. So many moms have sat together and held hands with this family as they fought for their baby's life. It is not fair. As Allison Barnes stated on Morgans page, We should not have to worry if our children are going to make it to adulthood. In less than 2 years I have met 6 children who will remain children forever. I cannot say anymore, but may none of you ever have the opportunity to look at a child and wonder if they are going to be there the next you come to clinic.

I am tired and I am going to bed. Please pray that this next round is tollerated as well as the last, pray that the next MIBG is clear, pray that Sophia's friend's family can rest peacefully now that their baby is free of pain and suffering, pray that another one of Sophia's friends, Kevin, has no cancer markers in his blood tomorrow(it really is a growth spirt), pray that Larry finds a bone marrow match soon. Please pray for all the families fighting for their loved ones' life.

Love and much peace to you all,
Diane and Girls

Tuesday, July 6, 2004 9:33 PM CDT

Hi everyone. All is quiet here. Sophia is doing very well. We had a clinic visit on Friday which she received platelets. We were off for the long weekend and this morning her platelets were 60k, crit 29, ANC 2700, she has almost recovered completely from this past heavy hitter round. I have yet to hear the results of the most recent MRI. Apparently the radiologist, I think cheif of radiology, has been on vacation and the Onc does not want a resident reading Sophia's report. So here we are with no news about her progress or about our next step in treatment. I will update when I know more.

Sophia and Olivia had a great weekend. Thursaday the girls saw a great Fireworks display with their dad. Friday we spent the day with Heather, a friend from preschool, the girls had a blast and so did I. Saturday and Sunday were spent with family. Today After dinner Olivia and Sophia went on a bike ride, of course with mommy's hand on Sophia's back the whole time, but she went the whole ride around the block on her big girl bike. She is so strong. Today I cancelled my registration for the PAN MASS Challenge. I will not be able to participate this year, the $1700 minimum was too mucch for me to try and raise this year. Tomorrow I hope we can get to the beach. Enjoy!!

Thank you for looking in on us. Please continue to pray for Sophia's progress towards disease free status and safe transplant. Also pray for all the others fighting this nasty disease.

Wednesday, June 30, 2004 8:48 AM CDT

Happy Wednesday. Today is an off day. We will spend the day at home in the sprinkler. Sophia has done very well since her last dose of chemo. Yesterday her ANC was 810, up from 27 on Monday(ANC=absolute neutrophil count-infection fighters) her crit was 29, down from 30 but not too worried and her platelets were only 28k. Nurse Maryjo gave her a platelet transfussion so we would not have to return to clinic until Friday. We were expecting her to take up to 3 weeks to recover from this round and so far her marrow seems to be working and we could be on the way to recovery. Platelet counts are always the last to drop and the last to recover so we are not out of it yet but we are very happy her white counts are coming up.

Sophia did well with her MRI yesterday. It was delayed by 45 minutes and she never complained or asked for something to eat. She went right to sleep and woke up 2 hours later looking for peanutbutter crackers. Most kids recovery nurses only allow juice or water while recovering from the effects of anesthesia, not Sophia or most of the other hospital oldtimers. SOphia gets what she asks for they know her. The nurses all come over and say hello when she wakes up. How many of us look forward to clinic days for our social life? Our kids can play together because they would not be there if they were contageous, and moms can sit and talk about something other than cancer or about cancer.

Thank you for looking in on us. I will update the results of the MRI once I have them.

Love and Peace
Diane and Girls

Friday, June 25, 2004 0:20 AM CDT

Go Florida Gaters and thank you for the M&Ms. Give Blood.

Hi everyone. Have I mentioned how great it is living at my mom's? I was able to go out to a concert tonight (by the way it was awesome)and the kids were tucked in with out me. I have been out several nights since I moved in with my parents. Once the kids are in bed I run out to the store, or out for Icecream or a candybar or just to blast my tunes on the radio. A friend of mine told me she never saw the slide show that is above she just thought it was music playing on the sight. She said she just scrolls down to the updates. I have important links above the journal entries as well as the slide show. I have not had too much opportunity to update the show as my computer stuff is packed away but there are new photos up now so please take a peek.

Sophia was in clinic on Wednesday and her counts were fine, crit 24, platelets 245K(I think that was incorrect)whites 1900. While the we were in clinic Wednesday Sophia and Olivia went into get a checkup with another little girl, Katie, on Sophia's request. I was sent away, as was Katie's dad. The nurse told me they were discussing how they got their "cancer BOO Boos". Olivia explained that when Sophia was a baby her eyes changed color(the bruises from the tumors) and that made her cancer. Sophia asked who put her cancer back in her leg and Katie told her that no one put it there that her cells just got confused. Ever see that show with Bill Cosby,"Kids Say the Darndest Things"? I wonder how much $$ would be donated to Pediatric Cancer Research if a show with cancer patients and their siblings was aired. Mary Jo, Sophia's Nurse, thinks she will need blood on Friday. We will be in clinic bright and early,I hope.

Sophia's next scan is scheduled for June 29. It will be an MRI. I will hopefully get an opportunity to see all her scans next week. I keep forgetting to ask.

Thank you for all you prayers for Sophia. Should there be improvement in the right tibia(ankel) we will be preparing for transplant.

Love and peace,
Diane

Tuesday, June 22, 2004 10:19 AM CDT

SEE THE NEW SLIDE SHOW/The beach photos I took 3 weeks ago.

Hi everyone, We are home!! We came home Sunday night. We surprised Olivia and Daddy, they had no idea we were coming home. Olivia was so happy to see Sophia. Olivia stayed with her dad while Sophia and mom were doing the chemo thing and when olivia came home we were home, SURPRISE!Sophia made a beautiful Father's day card for her Daddy.

Sophia is a powerhouse. She tolerated the Chemo very well and has been feeling pretty good at home so far. On Sunday night she had her Zofran for nausea but I also tried to give her some oral Vistoral/Phenergan,also for nausea, just in case the Zofran was not enough because the Carboplatin can cause delayed nausea for up to 48 hours after the infusion. Aparently it was too much for her tummy and she vomited. Sorry Sophia. Yesterday she just had her regular doses of Zofran and had no complaints she even ate a little. Today we are going cold turkey. I will be sure to keep her hydrated but so far she has not mentioned her belly and even ate 2 waffles.

we are going to be laying low for a while. Her counts are expected to drop quick and stay down for a while. She may get mouth sores because her counts will be down for so long. Chemo is targeted at cells that multiply quickly, cancer cells but it also kills bone marrow and the cells in mucos membranes and hair. The mouth sores occur when the cells in the mouth stop multiplying but also do not stop dying and a whole is formed. To prevent infection because there are alot of nasty germs living in the mouth the mouth has to be cleansed. I have not been too dilligent with mouth care, not doing it at all I should say. Her counts really have not been low enough to cause mouth sores but now that she will be down for a while I will have to start. Mouth care, for those who do not know, is done with a rough sponge on the end of a stick, tickles the mouth terrible and does not make you laugh. I have to soak it in a 1 to 1 peroxide and sterile water solution and rub rub rub it around her mouth. Sometimes it makes her vomit, which is why I have not been doing it until now. When she was inpatient for chemo her first time around and in transplant I made the nurses do it. She screams and fights the whole time and I did not want to do it to her now I have to do it. She has never had mouth sores so I hope it will be the case again. In transplant she had sores in her throat and into her intestines and her nose but never in her mouth.

We have to go to clinic on Wednesday and I will update on her counts and when her scans will be.

HAPPY BELATED FATHER'S DAY, I hope you all had a great day.

As always we appreciate your looking in on us and holing us so close in your hearts. Please continue to pray for Sophia as we start moving towards tranplant.

Love and peace,
Diane and Girls

Friday, June 18, 2004 9:54 PM CDT

Sorry it took so long to update you on Sophia's next phase of treatment. We have decided Sophia should receive the ICE protocol. She started on Thursday and will finish on Saturday. Sophia will receive 3 2 hour infusions of Etopiside, 3 3 hour infusions of. Ifosfomide and 1 1 hour infusion of Carboplatin followed by 22 hours of Mesna ( to protect her bladder). She will stay inpatient until Monday so her electrolytes can be monitored closely. So far she is doing very well(knock,knock,knock). After this round is complete she will scanned, an MRI of the legs to see if the ankle has improved. The MIBG was reviewed again and showed no uptake anywhere in the body other than the right tibia (ankle area). The MRI still showed somthing on one thigh but again they did not comment on the other. So they will be looking at that area again. Also the rt tibia is unchanged. Sophia's blood count will be compromised for several weeks and we will be making several trips to Floating Hospital to check counts and blood transfusions.

Poor Olivia is starting to feel the effects of all this. Up to now she has been very good. When mommy and Sophia would leave for the hospital she would just say "bye mom I'll miss you" and that would be it. This week she cried and would not let me go. She asked why Sophia had to get th ecancer booboo back again. Hopefully we do not have too many more inpatient stays, it is getting harder for Olivia.

I will update again once she has completed this round to let you all know how she is doing. Thank you for praying for her. I needed to hear some good news and I now feel like we are making good progress. If she has shown improvement and hopefully the area in the tibia will also be resolved she will have one more cycle of chemotherapy, not sure what yet, and then move into transplant. Hopefully this will be the end of it. I hate so much being here, not only my own sick child but all the others here as well. So many fighting to live, so scared and their families.

Please don't forget to sign in before you go. I love reading your guestbook posts.

Love and peace
Diane and Girls

Tuesday, June 15, 2004 7:57 PM CDT

The scans are done and the results may be in. Dr Wolfe read the results of the MIBG to me and the radiologist may or may not have missed something. Her abdomen seems to have resolved and the ankle still shows uptake with no change. There was no word mentioned about her thighs. The radiologist only stated there were no other areas of uptake. I am not convinced they really compaired all slides. I asked that they be read again. So we still wait.

She did not start chemo this week as she should. We are trying to decide on treatment. Dr wolfe recommends a protocol called ICE, Ifosfomide/Carboplatnum/Etoposide. All very heavy hitters. Her recovery will be long but the difficult area in the ankle may be taken care of all together, Maybe. We could revisit the Irenotecan/temezolomide but that may not be strong enough or Cytoxan/Topotecan but she may soon develope a resistance to these drugs. The problem with ICE is that it is very risky. It will effect the potassium in her body and she may have to go to the pedi intensive care unit. Her counts will be at 0 for a long time running the risk of dangerous infection that may be life threatening. BLA BLA BLA. Any one want to trade??? The problem with this decision is that if we decide to do light chemo and progress I will feel I should have done something els, if we decide to go with the heavy duty and something happens to her again I should have done the other. If I let the Dr make the decision for me and something happens, then I will feel like I should have made the decision. A mother's guilt runs deep.

I will update you all as soon as I get the accurate info re her scans. Thank you for all your thoughts and prayers. It is getting so hard now, before it was easy to let go and let the Dr do the work but now with relapse there are so few known options and none of them work well enough to make educated decisions based on long term survival because not too many have long term survival. I am tired and I am going to lie down and watch TV.

Love and peace
Diane and Girls

Tuesday, June 8, 2004 9:47 PM CDT

A prayer request for Sophia. Sophia is starting her scans tomorrow, CT, MIBG(nuclear scan) on Thursday and MRI on Friday. The Docs are checking the response she has had from the chemotherapy. I have been very disapointed with every scan she has had since her relapse. I am in desperate need of good news. Please pray she has had good, or dare I ask, significant improvement in all areas; both femurs, ankle and abdomen. This prayer chain has been good for Sophia in the past; platelet calls etc lets get it rolling again.

Thank you all for staying with us through all of this, we need you all now more than ever. I need you all to send thoughts for Sophia this week. CT is at 1:40 PM on Wednesday, MIBG scan is at 2:30 PM Thursday and MRI at 11:00 AM on Friday.

Sophia seems to have recovered from her last round of chemo. She did not need any blood products on Monday and you can see she is very fiesty. Her white counts are up so the shots were discontinued on Monday. Sophia was very happy when Mary Jo (Sophia's Primary clinic nurse) told her no more "pinches". Sophia gave her a big hug and a kiss.

This week the Sicilian Association of Greater Boston gave Sophia a very generous gift towards medical expences. The kindness of strangers that we have felt since Sophia's diagnosis is truly amazing. Thank you.

Thank you so much for checking in on us and all your kind words. I am so happy there are so many out there who care for us and especially my girls.

Love and peace to you all,
Diane and Girls

Saturday, June 5, 2004 7:29 AM CDT

Its the weekend and we are stranded again. Sophia's ANC is O. She has no immune system to fight infection right now so we are homebound. I hope the weather is good so we can atleast get out for a while. Sophia had a transfussion of platelets (thank you donor) yesterday. Her platelets were 17k. I am glad they dropped before the weekend so I would not have to worry about it. She will most likely need a transfussion of redcells on Monday and possibly more platelets. She dropped her platelets so fast this round and they take the longest to recover. Sophia is feeling ok. She is very anemic but you would never know it. Last night she was up past 9pm and woke before 6am. Ithink we might have to take a ride in the car today to get her to take a nappy.

SCANS NEXT WEEK, PLEASE PRAY FOR A MIRACLE AND SHOW MINIMAL RESIDUAL DISEASE SO SHE CAN SAFELY ENTER TRANSPLANT. I AM NOT ASKING FOR NO EVIDENCE OF DISEASE AS THAT IS TOO MUCH TO ASK FOR.

We were invited to a bowling party today for the Friends for Life but I think we will not be able to go as her ANC is 0. I will be sorry to miss it, there will be many Neuroblastoma families attending.

I was hoping to get a Lemon Ade stand going for Alexandra Scott next weekend but I am so busy. I contacted the Red Sox but they said they had to wait until the Sox were out of town to talk to me. Someone did finally call me on Friday but I missed the call. I think it is too late to put something that big together so soon. I am trying to do too much, I think.

Thank you for checking in on us and you thoughts and prayers. Remeber to sign in, we love mail.

Love and peace,

Diane and girls

Monday, May 31, 2004 8:22 PM CDT

Hello everyone I am sorry for the delay in updates. I have been very busy. LAst week SOphia had her second round of Topo/Cyclo and tolleraated it well. By this time last round she had her "hand and foot syndrom", thia time she has not had it yet. I tried to keep her bare footed as much as possible. I am sure getting alot of looks from unaware moms out there. Her feet are peeling but that is all. Sophia had a scan last Monday to check out the node in her belly and there was no change, her doctor thinks this is a good thing I don't. I want this to work and fast. I am tired and she is tired and poor Olivia, she has no friends.

I sold my house and moved out Friday. The packing was hard between 8-9 hour days traveling to and from the hospital for chemo. I am officially living back at home with mommy. It will be easier, no laundry, cleaning, cooking, and I can go out at night thanks mom. Just kidding mom, the laundry is in the dryer. mom and Dad are on thier way to Bermuda right now. But it will be easier not having to worry about what to do with Olivia if we have one of those late night fevers. We are also ony 12 miles from the hospital.

The Docs are wanting to move along quickly with her transpalnt. I am afraid she has too much disease to send her the transplant now. What if it doesn't work? The GVHD can be bad, what if she is too sick to have more chemo if this doesn't work? I am making life saving decisions for with no data to go on. I am only supposed to decide on what clothes to put on my girls or what outing we are going to have today or what playdate to make this week or at most whether or not to give the vericella (chix pox) vaccine. I made the wrong decision with the chix pox, neither of my girls had it. I scrambled to get it for olivia while Sophia was in transplant last year. This sucks. The docs are afraid if they continue with chemo and not get her into transplant her cancer will flourish again and we will no longer be able to use transplant.

Sophia has lost her hair. She does look very cute with no hair. I can't stop rubbing her head. It is not completely gone there are some straglers. She doesn't care at all. She is so strong.

Thank you for looking in and i will get the beach photos up as soon as i find my camera. Also thank you for your prayers and kind words.

Love and peace,

Diane and Girls

Tuesday, May 18, 2004 8:29 AM CDT

Sophia and I made it through the weekend without any problems. Saturday I spent the day on the couch. It was so odd, I felt like I could not move. On Sunday we were off to Grammy Betty's. Sophia wanted to make a cake, vanilla with chocolate frosting, she only eats the frosting. While the cake cooled we went to the harbor to watch a cruise ship set off and get an ice cream. The girls did a fabulous job frosting the cake and a better job eating it.

Sophia's blood was low enough to transfuse, thank goodnes I don't think I could have gone another night scanning for bruises or broken blood vessels or blood with every sneeze. Her crit was 23 and her paltelet count was 16k, too low for me and her ANC was 1,800 shots are still required. We arrived in Boston at 9:45 and left proptly at 5:15, what a day. We go back to clinic on Wednesday. Hopefully she has recovered and will not need anymore blood products and will be able to start her next round of chemo on Monday.

Friends of Sophia's Dad, Peter and Michelle, held a fund raiser for Sophia. A day of fun and food and music. I am very sorry we had to miss it, Sophia's white blood cell count was too low, just about at 0. They raised alot of money for Sophia's up coming Bone Marrow Transpalnt. Thank you all for all your generosity and kindness.

Thank you for checking in on us and all your prayers. There are new photos up from Sophia's Moster Party. Sophia wished for a party with a monster cake while in Florida. Click on each photo to get a closer look.

Love and Peace,
Diane

Friday, May 14, 2004 1:33 PM CDT

Happy Friday everyone. Today was a clinic day and I thought for sure Sophia would need a blood and Platelet transfussion but they want to wait until Monday. So we were sent home with a crit of 24.7, platelets of 30k and ANC of 18. I hate going over the weekend waiting to see if she gets a nose bleed or bruises. I am sure she will be fine. Other than that everything has been quiet.

For those of you that read about Colby on Sophias page about a month ago, he is doing well. HE was released from the hospital on Saturday and will start his chemo again next week, out patient.

Thank you for all your thoughts and prayers and please sign in to let us know you've stopped by.

Love and Peace,
Diane

Tuesday, May 11, 2004 8:18 PM CDT

Sophia and Oliva gave mommy the best Mother's Day present, they both slept past 9AM. Thank you, Amy for calling me at 8AM to say Happy Mother's Day, Ha Ha Ha. We had a great day; I made breakfast, cinnamon pancakes, and after lunch we went to Grammy Betty's so the girls could ride their bikes. Then mommy went out to dinner. The weekend was wonderful.

Sunday morning I spoke with a family who received an allogeneic bone marrow transplant as part of the first round protocol for Stage IV NB and after a year the child is doing well. There are more people talking about allogeneic bone marrow transplant for relapse. Maybe this will be the new way to go. I feel very strongly about Sophia receiving the allogeneic transplant.

Today was a clinic day for us. Sophia's crit was 29, platelets 160K and ANC(absolute neutrophyl count)250 her disease fighting cells are very low again so we started the GCSF shots again, I hate those shots. She screams so bad and begs me not to give her the shot. Sophia has had a reaction to the topotecan, the chemo drug she received this past round. Are you ready?? Palmar-Plantar Erythrodysesthesia or hand and foot syndrom. Basically the chemo has built up in her capullaries in the fingers and toes and burst the tiny capullaries. Her fingers and toes are swollen, red hot and sore. It will take up to two weeks for it to clear up. I don't think she will have topotecan again for several weeks. She will be the barefoot wonder for a few weeks. Also it is getting warmer and Sophia was complaing about the heat, it's only May!!! It will be a long Summer.

I hope all the moms out there had a great weekend. Thank you for checking in on us and all your thoughts and prayers.

Love and peace,
Diane

Friday, May 7, 2004 9:54 PM CDT

Sophia completed her third round of chemotherapy today and is doing well. Her blood counts are starting alittle so on Tuesday we will go back to clinic to have them checked again. It takes about 10 for the full effect of the chemotherapy to be seen and then her blood counts should start to recover. Her body has fully recovered from the therapy she has seen in the past so it is difficult to say whether or not she will require any transfussions this round. Sophia will have to start her GCSF shots on Monday to stimulate white blood cell growth. She is also taking Milk of Magnesia for constipation. She is doing well.

Sophia's scans results are in. Before I get into the results I need review past scan results. January 29 a MIBG was done as routine follow up that showed something questionable in the left Femur but advised to rescan in 6 weeks. Ct scan on orbits, head, chest, abdomen, hips and pelvis, and legs performed on February 2, showed inconclusive. Sloane-Kettering, after reading the MIBG results, orders an MRI of the femur only to rule out relapse. MRI done on March 4 and relapse confirmed in left femur and (incorrectly told)left ankle. Ankle was not immaged in the March 4 MRI however disease was found in the left hip area(info claified this week). Chemotherapy started March 9. MRI performed on her femurs only on March 31 and showed no change. April 5 starts round 2 of chemotherapy. April 28 MRI on the femurs. April 29 MIBG, full body, and Ct of orbits, chest, abdomen, hips and pelvis. MIBG showed disease in left femur, right hip area, right ankle and abdomen. CT scan revealed no other disease but confirmed a small malignancy in her abdomen, possibly a lymph node. May 3 a MIR was done on the ankle to confirm maliginancy. Looking at the time line between MIBG scans and the time passed from the MIBG January 29 and the start of chemotherapy on March 9 the most likely was disease progression to other areas that if an MIBG was done at the start of chemotherapy those other spots would have shown. The MRI from March 4 compared to MRI on April28 showed disease response in both femurs. Oncs are confident the "new spots" are not disease progression post chemotherapy but undetectable back in January. I have asked to see all scans each presented consecutively so I can see what is going on inside her. I will update what is explained to me by radiology.

This weekend is expected to be quiet. I may take the girls to see a herring run nearby tomorrow and Sunday is of course Mother's Day so I hope to lay low and enjoy being a mom. Happy Mother's Day to all the moms out there.

Thank you so much for checking in on us. Keep praying for our little Sophia. She is happy and feeling well so far.

Love and Peace,

Diane and Girls

Wednesday, May 5, 2004 10:59 PM CDT

Sophia started chemo on Monday in patient and has tollerated it well. She was sent home today to finish chemo outpatient. Some of the scan results are in and others had to be redone so I will updat the results when I have a complete picture.

Sunday gave Sophia a Monster Party. In Florida Sophia made a wish on a water fountain for a Monster Party and everyone knows that wishes made in Diasney always come true. She had a monster cake, monster pinata and monster growls. Sophia and Olivia had a great time.

I was feeling very alone in the hospital. One of the moms requested that I not visit with her because my situation scares her. Her son is on Stem Cell Transplant #2 and was also stage IV Neuroblastoma. In fact, he presented the same way Sophia did, bruising in the eyes. I do understand her fears but it makes me feel very uncomfortable. I am stuck. You so badly want to talk to someone going through the same things you are, someone who understands and not to talk cancer but to complain about residents or your favorite nurses. Due to elevated emotions from the scans and (I hate to say it) PMS, I was badly hurt. This is stressful enough as it is I don't need to feel that I have to hide to make someone elses life easier. I am waisting valuable energy on something unimportant but without support it makes this so much more difficult. I have people outside of the Hospital who cannot deal now they are inside. Sorry I need to vent.

Take a look at the new photos from the trip. I will have more photos up from the monster party later.

Thank you for your thoughts and prayers. Please pray that Sophia's cancer continues to respond to chemotherapy and we are able to put this nightmare behind us soon.

Love and peace,
Diane

Wednesday, April 21, 2004 4:46 PM CDT

Hello and we are sooo glad to be home. Sophia's clinic visit went well today. Olivia tagged along so Sophia was kept occupied while mom did a little socializing. Her crit is 34, platelets 300K,and whites are 13K so she has fully recovered from round 2 and I can stop giving the shots. Round 3 will consist of Topotecan/Cytoxan, 2 heavy hitters so she will be wiped out and will require transufusions and more GCSF shots. She will also loose those beautiful curls.

On a more positive note we will be flying out to Disney FL on Friday AM for Sophia's wish trip. All of us, Dr Nurses, Childlife and Mom agreed that this would be a great time for us to get away. We will be in Orlando through Wednesday.

The photo above was taken at the Boston Marathon on Monday. A friend of a friend, who has never met Sophia, ran the Marathon in Sophia's honor. Thank you, Christine and I hope you get to meet Sophia soon.

Also little Colby is out of ICU and is up on the Medical floor recovering slowly but well.

Thank you for checking in and pray that there has been a reduction of the malignancy on Sophia's leg. Scans are next week when we return.

Love and peace,
Diane and Girls

Monday, April 19, 2004 7:19 AM CDT

Sophia is home and fever free. SHe has a slight rash but ok. She has not been eating much over the past 4 days but has finally had some cerial this morning. The girls are very happy to be together again. I have to call clinic today to find out where we go from here. Taking it easy today, I hope.

Thank you for looking in on us and all your thoughts and prayers.

Love and peace
Diane and Girls

Saturday, April 17, 2004 3:39 PM CDT

Sorry for the daelay in updates. Sophia has been in the Hospital since Wednesday with a fever. She has been fine other than the fever no symptoms of any illness. She was released today but to me still looks down in the dumps hopefully we do not end up back in.

Sophia finished her second round of Irenotecan/Temodar(temozolomide) yesterday and her white counts have dropped significantly, ANC is now 550 platelets 119k and crit is 31. SHe may need a transfussion next week. SHe has also started GCSF, a shot given once a day to stimulate her white cells to grow.

Sophia will have scans, MIBG, CT, MRI the week of the 26th. Please pray that there has been response and the malignancies on her bones have shrunk.

Love and Peace
Diane and Girls
5:30 PM Sophia spiked again, 102. Back to Boston. Hopefully we go home soon.

Friday, April 9, 2004 10:14 PM CDT

T G I F
I don't think there has ever been a time that I was happier to see Friday come. Today was OK. Sophia was ill on her oral chemo again but the second attempt stayed down and went down with out too much complaint. I tried to send her off with the child life specialist and the nurse but she collapsed and screamed for me so I went off with her and she was great. We have used so many different avenues for the oral chemo; suspension syrups, juices, icecream, and yogurt. Today it was diet coke that kept it down. If she would just swallow the pill, they are not too big but she just refuses.
Sophia had a surprise visit from PaPa in clinic today and a sweet little girl we met through the cancer network named Isabelle also her big brother Oliver. It was a quiet day in clinic today so Sophia watched alot of TV but when Isabelle came in she was ready to play. Isabelle's dad took some photos so I hope he emails some to me. (hint to you Mike).
I have a renewed faith in the power of prayer and the miracles that result. A 2 year old boy, Colby, was given a chance to survive on Tuesday. Mom and dad were told to prepare for the worst, a miracle was needed to pull this child through a resection of a large unresectable tumor on the liver, hepetoblastoma(sp). The same Surgeon who removed Sophia's tumor preformed the surgery on Colby. A tumor the size of an adults head was removed as well as 80% of his liver. Although 95% of the tumor was removed that was not the only miracle, Colby suffered cardiac arrest 3 times on the opperating table. The surgeon messaged Colby's heart for 20 minutes. When his mother told me the story today I felt chills go through me. Any one of our children could suffer the same fate, disease progression no matter what chemotherapy was used. Colby's mom and dad as well as the surgeon noticed the morning of the surgery that Colby, normally a wiggleworm typical boy, was very sureen and calm almost like he knew and he was ready. God was with him and held his hand and the surgeon's as they worked together to live. It reaffirmed my beleif that we are in the right place and what we need to do to bring Sophia back to good health. Colby has a long hard road to survive but the fact that he left this earth and was brought back to look upon his mother's face and feel the love of his family again is enough for me. Pray for Colby and his family; that he is brought back to health and is whole, he may have suffered some brain dammage due to the heart stopping.

Thank you all for stopping by and checking in on us. Chemo starts again on Monday but it is only IV no oral. She will probably have the full battery of scans followingthe completion of this round. Hopefully we will see some shinkage of the malignancy in her leg and that the ankle is clear as well as no new spots.

Love and peace
Diane and girls

Wednesday, April 7, 2004 9:31 PM CDT

Sophia had a bad day today. Her oral chemo is done in clinic to save me from pinning her down at home and upsetting her and Olivia. Last round she took it fine with some complaint but she took it. This round she has been fighting it. Today, she vommited after receiving half the dose. The childlife specialist and I tried to coax her into taking the capsuls, no go. She flat out refused, even after threats of dropping an NG tube (tube up the nose and into the belly). We tried forcing the pill into her mouth, covering it in ice cream, making her drink milk with it, nothing worked. After 45 mins everyone gave up and prepared the Ng tube. As she sreamed I left because I could not hold her down for an NG tube again I did it once when she was first diagnosed and I could never do it again. I can handle just about anything, but holding her down and hurting her while something is sone that she does not want I just break down. In the waiting room I could hear her screaming for me. Sophia's favorite nurse in clinic, MaryJo, thought to mix the contents of the capsules in oral suspension syrup, 10 cc of it. We had tried to mix it with apple juice and that made her vommit, and we tried it with very little suspension thinking that less volume would be easier but she gagged. This is why MaryJo is her favorite clinic nurse, she was determined to get it into her without using the NG tube. Sophia finally swallowed it down and kept it down. When they were all done I went back to her and with a huge pout she said, " Mommy, why did you walk away?!?" I felt horrible. She will never remember the times I walked away, but I will. You feel like you've abandoned them. Other than the episode today she has been fine. Asside from some constipation she feels great and in a great mood.

Olivia was able to spend so time with a friend up from Florida, Auntie Harriet and Uncle Lou. She has not seen them since October. Sophia also spent time with Auntie Harriet and Uncle Lou when we came home from clinic. They were both very happy to see them.

An update on the Cookbook, over 200 recipes from places as far away as Austrailia and Texas and Florida. Thank you all, and keep them coming. The cut off date for recipes is April 30. For those of you who have sent recipes, thank you. They will be available for purchase sometime in May, I will keep you posted.

Thank you all for looking in on us and for your kind words. Continue to pray for her, pray the Chemo not only stops the cancer from growing but begins to break it down. She will be scanned again after this round, sometime in early May.

Love and peace,
Diane and Girls

Sunday, April 4, 2004 10:23 PM CDT

Hi and thank you for checking in on us. Sophia starts her second round of Irenotecan and Temozolomide tomorrow. I am going to ask if Vinchristine can be added to the mix. I hear that alot of kids have good response with Ireno/Vinchristine mix. I have not heard much about Temozolomide.

This rain stinks!!! Talk about weather induced depression, YUCK or could it be the PMS??? As one cancer mom once said "I am tired of cancer" Olivia says a prayer to God every night asking God to take away Sophia's Cancer BooBoo. Now she adds that she hates and it is "stupid". A word I do not like her saying, I just tell that's right we hate the cancer booboo. Tonight she added a NEW word to her speech about the Cancer and I don't believe I can repeat it here. She has heard it too many times out of my mouth over the past 1 1/2 almost 2 years. Sophia also prays to GOd to make her Cancer BooBoo go away. Tonight she yelled and growled at it and yelled at it to get out of her, we laughed after. They are both very cute little girls.

I am petitioning for all cancer families to be assigned a government appointed "Helper" or Assistant. This job would entail running errands like "Oh SH*T, I forgot to buy milk, or Da** I forgot to drop off the prescription and the kids are in bed, or even Oh God the dogs been locked up all day and now we need a blood transfussion. They would also be in charge of monthly bills so we do not have to run the "Cr** the cable is going to be shut off if I don't get the bill to the office before 5 pm and now we need a blood transfussion" errand.(that only happened once). But if all bills can be set up on autodebit(the assistant would set that up as well)the bill paying would be removed from the job description and the ballancing of the checkbook would have to be added, someone has to keep track of all the autodebits and those all to common "Mommy, I want Chicken Nuggets and French Fries, NOW", but then how am I going to pay to get out of the Da** parking garage, OOOh ATM! How about the "Oh man, 8 hours at the clinic and then traffic, are you sure you kids can't have cerial for supper just one more night?" And then there is always the Thank You Notes, don't we all forget to do those Thank You Notes. Can I add all aspects of life that do not include Cancer because we all know, as Cancer Moms, no one can do this job better than we can. We are the only ones able to get the most nasty tasting drugs down our child and be sure they keep them down, We are the only ones who can give the shot so it won't hurt so much, We are best at holding even the strongest of kids down so what needs to get done gets done, We are the only ones capable of dragging them into clinic for yet another "Yucky day" and dragging them out when all you want to do is get the he** home and the child wants to play now that the "Yucky stuff" is done, We are best at cleaning up after they are sick, We are the only ones who can keep their hands free of Germs so they don't catch a nasty bug, alot of ETC. There is only one way to get the Cancer Mom Job, no interview required, but I don't think any of us would let anyone do it for us. Now this Assistant job, on the other hand, is a job that can be filled by many and the Assistant is allowed as many Assistants as it takes to get the job done. Who do I get to Lobby the Senate for this government assignment to be created? Do I lobby the Senate, is that how it works??

Sorry to be so long winded something just sparked me off tonight, and that does not take much these days. Thank you all for your thoughts and prayers. Your kind words are very helpfull to us.

Love and peace,
Diane and Girls

Friday, April 2, 2004 2:50 PM CST

Just a quick updat. Sophia's MRI was finally read this afternoon and there has been no change. The malignancy on her bone has not deminished at all but it has not grown. The doc were very positive about this. We will start chemo on Monday, two weeks of Irenotecan and 1 week on Temozolomide. Then scan again. The Third round will be topotecan and cytoxan. a stronger mix. I have to run now.

Thank you for all your thoughts and prayers.

Love and peace
Diane and Girls.

Monday, March 29, 2004 6:18 PM CST

Sophia had a clinic visit today and all is fine. Her white counts are 6,600, crit 34 and platelets 287,000. I was told not to expect a drop in counts from this round of chemo. She is scheduled for an MRI on her legs to check the malignancies on her left femur and right ankle, check for chemo response. I honestly feel there has been a response, she has been happier since the second week of chemo and she is more mobil. She has not said her legs hurt in over 2 weeks. Her second round starts on 4/5, monday-Friday weekend off and Monday-Friday. This round is the same as the first, Irenotecan and Temezolomide. Sophia's third round will be switched to Topotecan and Cytoxan(cyclophosphamide), which will be inpatient. She will have an EKG prior to each infussion( I am assuming it will be once a day for 5 days)as the Cytoxan can cause dammge to her heart. I am sure when she will go into transplant, soon I hope. I can't wait to put this behind us again.

Olivia and Sophia had to spend the weekend apart. olivia got a nasty spring stomache bug. Sophia spent the weekend with me and Olivia with her dad. They sure missed eachother. Thank goodness it was only for 24 hours. Olivia is fine now. Olivia went with us to clinic today and the girls held hands in the car all the way to the hospital and then walked holing hands to the clinic, it was so cute. In clinic Sophia insisted on sitting on Olivia's lap for her checkup. They had a fun day together with M&Ms for the ride home.

Thank you for checking in on us and all your kind words. Please continue to pray for Sophia as well as all the others battling cancer. Also don't forget to email those recipes to Kathy for Sophia's Garden, the cookbook in honor of Sophia. No recipe is too simple or too hard.

Love and peace
Diane

Thursday, March 25, 2004 9:56 PM CST

Wednesday came and went with no transfusions. Her blood levels are great. Her check up went fine and we again discussed briefly her transplant. She is expected to have a full transplant and not a "minitransplant" as mentioned before. I am still waiting for her Onc to get word back from Chicago on the particulars but transplant is not in the very near future so I will not push it. Ben, Sophia's Dad, will get his blood tested to be sure he is safe to give marrow to her. This screening is generally done within 30 days of transplant but we do not want to wait if there is any reason why she should not get Marrow from Ben we want to know early so we can get her on the national registry. She is still constipated and we switched her from Colace to Phillips MO. Hopefully it helps. As you can see from the photos they had a blast in the Snow last week.

I spoke to her Onc about her going swimming and he is set against it. He does not like any standing water. It would be a shame for her to get a blood infection this early in the game. He said to let her swim in the tub. I was hoping with the port that she would be able to swim.

Here is what mom has been up to these past few weeks. I cancelled the Disney trip 4 days before take off, many of you knew about that already. I withdrew from college. I cancelled a two week vacation in Maine we were going to take over the Summer. I put my house up for sale, Sophia got sick 4 months after I moved in and I am not happy here anymore. I again withdrew both girls from preschool. A prayer has been answered and Sophia has a bone marrow match in the family. I have wonderful and loving children and family and friends. I am Happy!!

Thank you for checking in on us. As always thank you for all you thoughts and prayers, it will see her through again.

Love and Peace,
Diane and Girls

Wednesday, March 24, 2004 7:01 AM CST

Sorry for the delay in updates. Sophia is fine. She never suffered from diahria that I was told to expect but she may still get it next round. We have clinic today and her blood counts will be checked, I do not foresee the need for any transfusions this round. She will possibly the next round but most deffinitely will need transfusions when she is switched to heavier drugs.

On Thursday Sophia's Papa built her and Oliva an igloo. I will have photos up later today.

Thank you for looking in and continued prayers.

Love and peace
DIane

Thursday, March 18, 2004 2:15 PM CST

Sophia has a Bone Marrow Donor Match. Ben Donnarumma, Sophia's Dad, will be giving his bone marrow to her in order to save her life from this awful disease. He has been given a great Honor. How many opportunities are we given a life time to save the life of another? Ben will give Sophia the gift of life twice, once on September 1, 2000 and again sometime in the near future. We have been Blessed with hope from this horrible nightmare. Thank you all for your thoughts and prayers. It has and will see her through.

She is still doing very well and has actually shown some improvement. She is scheduled for an MRI of her Legs on 3/31. Please pray this ugly thing is leaving her body. We are not sure when she enter transplant we have to wait for to return to remission status.

Please continue to check in and to pray for her, she has a long road ahead.

Love and peace
Diane and Girls

Tuesday, March 16, 2004 10:16 PM CST

Day 8 and Sophia is doing well. The oral chemo Temezolomide I think is what was causing her loss of appetite. She has been eating alot more and asking for food instead of me telling her she has to eat. Sophia was in a wonderful mood today as was Olivia. They palyed and made pictures it was very nice. Clinic was very quick, in and out in 2 hours. Sophia has a med student that will come to sit with her and play while she is in clinic, its a nice break for me. I am not looking forward to the ride in tomorrow. It is snowing petty good now and will continue through tomorrow. I wish we were in Florida right now.

Recipes Wanted!!
To all of you good cooks out there...We are currently doing a
fundraiser
cookbook for Sophie, and I would love to have any recipes you might
consider sending. You can email them to me at Kdeang55@comcast.net
Thank you, Kathy

A friend and neighbor would like to put together a cookbook much like the one Morgan Barnes Family had made. I received an email about it and it seem like it will be pretty nice. Send the recipes on.

Thank you looking in and please remember to pray that Olivia is a donor match for Sophia. Transplant will be so much easier on her if Olivia's marrow is used. Also pray for Carl and his Family I think they are coming to a cross in the road and need to make some decisions about his treatment. www.caringbridge.org/mn/carcar. How difficult is it to make decisions about ones own life let alon about the life of your child. Truely we hope we are making educated decisions but how can we when not even the Doctors know what is best. Trust in God.

Lova and peace
Diane

Monday, March 15, 2004 6:28 PM CST

Monday day 7. Long day today. Mondays are blood draw days so you must wait for the blood counts to come back before they start the chemo. Her counts are fine ANC 2900, crit 33 and platelets are 292k. The blood does not get effected by these drugs. We got to clinic a 10:15 and left sometime after 2. All that time for a 1 hour infussion of chemo and a 30 minute infussion of Zofran (antinausea). Sophia still feels fine. I was very happy not to have to force that horrible tasting temezolomide down her today. I am waiting for the diahrea to start, I understand it could start anytime from now untill a few days after the cycle ends. I am all set with pull ups and wipes, eventhough she is trained, and the potty seat is in the car and extra change of clothes just in case. Be prepared it may not happen.

You may or may not know that I have 2 dogs, Bailey a mini daschound and Bruno a dalmaition. Bailey is a female and Bruno is a male. Males lift the leg to do their business, I am sure you know this, and females squat. Everytime Bailey squats Bruno lifts his leg right over her and "leaves his mark". Baily is not territory to be marked and she is a spade female so there is no attraction there. I do not understand why he does this. I have witnessed it, he follows her around the yard and waits for her to make her move and then the leg goes up. I had to bathe her this morning because her back was soaked with pee. Now what I also do not understand is why she doesn't just move when she feels what is happening to her. Could it be that once the damn lets loose she cannot stop to move or is it she is just so cold out there that she enjoys the warmth of the minishower?? I guess Iwill never understand.

Thank you for checking in on us. Please remember us the end of the week as we will find out if Olivia is a match for the Bone MArrow Transplant, pray she is. Also remember all the others fighting this battle. Carl is probably going to do the same treatment plan as Sophia. www.caringbridge.org/mn/carcar.

Love and peace
Diane and Girls

Sunday, March 14, 2004 6:46 AM CST

Good morning. Day 6. Sophia had chemo yesterday and still is doing well. Just as Kelly, Carl's mom, said you would never know she is on chemo now. She has a fairly good appetite most of the day and in a good mood. yesterday was the last of the oral chemo, Temezolomide, thank goodness. I hate forcing it down on her. The nurses in clinic say most of the kids spit it out or vommit, Sophia is a trooper she swallows it and keeps it down. She is off the oral chemo for 3 weeks and has one more week of the IV Irenotecan, starting Monday, and off for 2 weeks.

The girls will spend the day out with their dad. Hopefully I will get some cleaning done. The house is a MESS. I think I had more energy after riding the 50 mile Cycle for Life last summer than I do after 5 hours in clinic. Olivia has been having fun with her friends while we are in clinic although yesterday she chose to spend the day at Papa and Grammy's house instead of at a pool with my friend and her kids. She had a great day with Papa and Grammy. Also cousin baby Hunter came over to play too. Sophia love that little boy. I think next week if she is over this cold she has had for over 3 weeks I will bring her with us a couple of days.

I have a question for all the moms. Is it just My kids or are they waking up at 6AM?? Why is it every spring they wake up at the crack of dawn. I could put Olivia in a room without doors or windows and I bet she would still wake up at sunrise. At least Sophia will quietly climb into bed with me and usually go back to sleep for a bit but Olivia is like a bull in a china shop. BANG BOOM CRASH. Wakes us up.

THank you for all your kind words. The prayers will help her through. Keep in mind all the kids that are fighting cancer. Go to the Red Cross and donate blood or platelets. There are people who have to wait for transfussions because there is not enough in the supply.

Love and peace
Diane and Girls

Thursday, March 11, 2004 9:58 PM CST

Hi Day 3 and all is well. She is still feeling good but her appetite is off. She only really wants to dring milk after chemo. I try to stuff her in the am before we go to clinic. She still says that the oral temezolomide hurts her throat but she could have some irritation from the breathing tube from surgery. The nurses say they have never had someone complain that this med hurt while going down. She has been showing some weakness giong up stairs the past few days but does not complain of pain in her legs. Even when I ask her if she hurts she says no. Unfortunately she could be so used to feeling pain that she doesn't know what it is like to not feel it.

Olivia has been having many playdates this week and also for next week but she cried today that she missed mommy. Hopefully she will get over her cold and one day next week she can come with us. Mommy has been ok too. I have to force myself off the computer everynight and I need a sedative to sleep but other than that I am ok. And Yes my friend I have been eating!!

Sophia was begging me to make chocolate chip coockies even though she does not like them so we did. They stayed up after bedtime and we made a big mess making coockies. I will bring them into the nurses because if they are here I will eat them.

I have some new photos up from a dog show we went to with a woman from the On Course For Kids fund raiser back in December(I think). She is a very nice woman and has 2 beautiful girls. Her dog won third prize ribbon and she gave it to Olivia. I also put up a photo of the girls and their friend, Heather. She is a cutie.

I want to thank all of for your kind words, thoughts and prayers. She is doing very well and I feel with continued prayers she will continue to do so. I also want to thank Pam Foley for her continued support of Sophia's Families First Fund. She is the Owner of an Auntie Anns pretzell store in Providence RI and she has a donation bucket at her store and every few weeks she comes to me with a big bag of money for the fund. The fund helps families dealing with cancer at Floating Hospital For Children in Boston. Thank you.

Also please do not forget all the others fighting this disease. You can see many of them at this web page: http://www.beebo.info/ click the link for Neuroblastoma Wariors

Love and peace
Diane

Jordan's Rules: Let your children sleep in your bed, let them
make messes, have more patience, don't take anything for
granted and tell them you love them all the time.

Wednesday, March 10, 2004 2:23 PM CST

HI
Today was day 2 of Sophia's first cycle. She did very well. The Irenotecan ran over 1 hour preceeded by Zofran for nausea followed by a 20 min flush. The temezolomide is taken orally and is very gross according to Sophie. She screeams it hurts her throat after she takes it. The Irenotecan is expected to cause stomache cramping and diarreah (sp). She played with just about all the toys in the clinic and made a huge mess with glitter and glue. All in all she is doing well and seems to be comfortable.

Thank you so much for cheking in on us and for all your prayers it will see her through. Please pray the chemo is effective and that Olivia is a match for Sophia.

Love and peace
Diane

Tuesday, March 9, 2004 9:06 AM CST

Sophia is feeling well. She had an infusaport placed last night and is now waiting for chemo to start. She is scheduled to receive 2 drugs, irenotecan and temizolomide (sp). Temezolomide is and oral chemo so we will have to find someway of getting it in and the other is IV. These drugs can be administered on an out patient basis, YEAH, I think. She is starting to complain a little of leg pain but still jumps and runs around. There are malignancies on both legs, the left is 6" long on her femur(yes I said 6" long) the other is a small spot on her right ankle. Her spirits are very high, very happy. I am not sure how long this part of her therapy will last. She will go to clinic for 1 infussion over 2 hours for 10 days and I think she will have 4 doses of the oral chemo for the same 10 days. If she has a good response this therapy will continue untill she back in remission and then she will have a mini-allogeneic transplant, we had all been typed yesterday and hopefully Olivia will be a match. Then I think there will be more accutane.

Please pray these drugs work for her and she is back to her healthy self again soon. Thank you all for looking in on us.

Love and peace,
Diane

Friday, March 5, 2004 2:16 PM CST

It is with a heavy heart that I must tell you Sophia has relapsed. She has a spot on the left femur but is not experiencing any pain. We will know more on Monday AM. Please pray that this is only a minor setback. That cancells our disney trip, sorry Girls.

Jordan's Rules: Let your children sleep in your bed, let them
make messes, have more patience, don't take anything for
granted and tell them you love them all the time. God bless you, Jordan!


Thank you all.

Love and peace
Diane

Thursday, March 4, 2004 2:24 PM CST

MRI DONE THIS AM. WAITING FOR RESULTS. PRAY THE MRI IS CLEAR.

Tuesday, February 24, 2004 10:42 PM CST

Hi all so sorry for the delay in updates. I have been very busy with college and etc also my computer has been out of commission for over a week. As you can see the hair is coming in nicely. The Make a Wish volenteers will be meeting with us next week for the Disney trip. We cannot wait. We leave in 2 weeks. All has been fine here.

Sophia's scan results were sent to Dr Kushner at Sloan Kettering and he requested an MRI on her leg. As you may remember she had a questionable spot on her thigh. I am glad they are looking into it further. I knew once Sloan saw the scan results they would order more testing. They always want to error on the side of caution. I am not too worried.

I have registered for a fund raising walk for the hospital where Sophia received her treatment in Boston. A six mile walk around Boston Harbor. The money my team raises will go into a fund at the hospital in Sophia's name that helps other families dealing with cancer. Check out the Link bellow. I also registered for the PMC or Pan MASS Challenge. This is a bike ride acroos the state of Massachusetts. I am only doing part of it,89 miles to be exact. The money my team raises for this event will go to Dana Farber Cancer Institue in Boston to fund research for Neuroblastoma only. Dana Farber has a tissue sample of every Neuroblastoma tumor in the world. See also the link below. I will have a busy Summer. There will also be a 50 mile ride, Cycle for Life. I will have to get into shape and work off all the extra winter weight I have.

Thank you so much for checking in. Please sign in to let me know you stopped by. I love mail. Pray for Sophia as well as all the others battling cancer.

Love and Peace,

Diane and Girls

Wednesday, February 4, 2004 7:23 AM CST

Well mommy has finally relaxed. The MIBG scan showed something questionable on her thigh. The Onc told me not to worry as Neuroblastoma does not come back that way as the spot in question was linear. A bone and a CT scan was done and the CT shoed something in the flesh above her knee but the ONC is certain that it is due to some sort of trauma, fall or a bump. They will scan her again in 6 weeks. PHEW.

We are finally over the colds. Today is expected to break 40 degrees so we will be heading out to play. Both girls are doing well but they gave their cold to Grammy, sorry Grammy.

Thank you all for checking in on us. Continue to pray for us, that all scans remain clean. Also remember to look in on Carl Robinson's family as they are dealing with relapse. www.caringbridge.org/mn/carcar

Love and peace,
Diane and girls

Wednesday, January 28, 2004 7:06 PM CST

Sunday was my Olivia's 5th Birthday. Happy Birthday Olivia!! She had a great day asside from the head cold. We went to Build A Bear and all of Olivia's friend were able to make a bear, it was so cute. My sister helped me put together a Castle cake. She was so excited.

Sophia was scheduled for her scans this week but she came down with a head cold. Sophia requires sedation for her scans and they will not sedate her with a cold, it is too risky. The CT scan was cancelled. However, MIBG is still on for Thursday. Over an hour without sedation in which Sophia must lay still. I hope she is old enough to understand that she must stay still. I was told to keep her up late tonight and give her benedryll tomorrow. Ha Ha we will see. I think mommy will be sprouting some grey hairs tomorrow. I wanted them to reschedule the MIBG but I was told the drug had been ordered and it would cost the hospital $2300 and rescheduling would be very difficult. Was that a threat?? We will try the scan at 9 AM and if does not work we will reschedule and the hospital will get their $2300 from my insurance company. The CT scan will be February 11th.

Everything els is going well. We will live through the colds. I am hoping this congestion with out another ear infection. Isn't it just as easy for doctors and nurses to write in their reports ear infection rather than otitis media?? Anyone who has been following us since the start of the web page knows about the battle of the snackies I will have to say that there is a new winner, "SWOOPS" by Hershey's Chocolate. I was always craving chocolate (still am) and this new creation from Hershey's hits the spot perfect. They look a bit like Pringles chips but made of chocolate. They come in different flavors; Hershey's Milk chocolate, York Peppermint Patty, Recees Peanutbutter, and Almound Joy. I have yet to try the Recees but the Almond Joy is not worth the calories, it tastes horrible.

Please continue to pray for Sophia's progress, that the cancer never returns. Also for all others fighting this disease. You can see links to many of the kids battling NB on the "beebo" web page, http://www.beebo.info/.
Please also keep Carl Robinson in your prayers. They are bieng heard, his cancer is not only stable but is no longer detectable in some areas. He may not have to endure the dangerous experimental treatment in Philedelphia. As always thank you for checking in.

Love and Peace,

Diane and Girls

Friday, January 23, 2004 8:40 AM CST

The Bone Marrow and Biopsey are negative, noe evidence of disease. Thank God. She is doing fine, but hates her antibiotics. She has 6 days left of Bactrum and then we go back to 3 days a week with half the dose.

Next week Sophia will have the MIBG and CT scan. She has to take an oral solution to protect her thyroid called SSKI. It tastes horrible, I know because I try everything she has to take. She also has a speech evaluation next week so she can start speech therapy. Sophia does very well for her age but they are worried about her losing speech she has.

We are doing well over here. I have just started back to school. I hope to finish my degree in Communication Disorders in a few years. Taking 2 classes at a time will take forever but I hope to take mre once the girls are in school.

Plaese continue to pray for Sophia's good progress. We have been blessed with her good health.

Please also pray for Carl Robinson who has recently relapsed and is soon to undergo a very experimental and dangerous treatment at Children's Hospital in Philladelphia. See his webpage at: www.caringbridge.org/mn/carcar
As well as all the kids fighting this disease.

Thank you for looking in on us and signing the guestbook.

Love and peace
Diane and girls

Monday, January 19, 2004 8:25 AM CST

All is quiet around here, this is good. Sophia had a Bone Marrow Asp and Biopsey Thursday and we discovered from the presurg exam she has an ear infection. She has been sounding a little congested but no cold symptoms. I thought she might have an ear infection since the last time she was congested like this an ear infection followed. Her BMA went fine she woke from anesthesia drunk as a skunk. She never complained her back hurt after. I thought I would have to give her pain med but not my toughy. The next morning the girls were bouncing down the stairs on a peice of cardboard like it was a slide. She is a true powerhouse. Her MIBG and CT are scheduled for the end of the month. She has a speach evaluation at the end of the month also. Because of her hearing loss and the fact they cannot use hearingaids to help her she wil hve her speach evaluated to be sure she is not loosing the speach she has and determine if therapy is required now or later on.

We have been laying pretty low in this cold. We have been out bowling a few times, the girls love it. We have been to the pool a few times, the girls are enjoying their swimming lessons. Sophia has been like a normal child for the most part. She has been very moody lately, having screaming fits for no real reason, probably horrible threes. Disney Trip in 51 days. We cannot wait.

Please pray that Sophia's scans all come back clean and stay that way forever.

Pray for Carl Robinson who is now being treated for relapse of Neuroblastoma. www.caringbridge.org/mn/carcar

Saturday, January 3, 2004 0:38 AM CST

Today my almost 5 year old, Olivia, said; "Mom, I think I am big enough to sleep without the gate on my bed. But can I have pillows on the floor just in case?" Can it be anymore normal than that?

Everyone is doing very well. Sophia had a clinic visit the other day and she is fine. CRIT of 37, Platelets 278, ANC 2.7. She is doing well. Scans are set up for the end of the month: MIBG, CT, BMA and HVA/VMA. The crazies will come creeping in about a week before. I mentioned to someone that it would be nice if there were some way of remembering the important mechanical parts of the whole cancer experience but erasing all of the emotional parts. As I was driving home the other night I suddenly recalled the day we decided to cut off all of Sophia's beautiful blonde hair so when it all fell out it would not be a bother to her. I remember it did not bother me at the time but now that the memory has come back I was so hurt by it. I hope the good memories I am making now with them soon take over and all those bad memories stop sneaking in so often.

Christmas was wonderful, the girls together tearing into Santa's prizes. Olivia was in Florida last year because Sophia was expected to be in transplant. New Years day was spent with family at cousin Sarah's 14th Birthday party. HAPPY BIRTHDAY SARAH!!!!! Today we went swimming with cousins, Sarah and Kaitie. They had so much fun.

Please visit Carl's webpage. He just turned 4 and is suffering a relapse of Neuroblastoma. We spent time with his family out in NYC. He has been removed from the Antibody study and is awaiting a very new experimental treatment in late Feb or early March at Children's Phillidelphia. Relapse is so scary as there is no known treatment. www.caringbridge.org/mn/carcar

Thank you for checking in and as always please keep us in your prayers as well as all the far too many other children waging the battle against cancer. The will more Christmas photos as soon as I remember to do upload from the camera.

Love and Peace,
Diane and Girls

Saturday, December 20, 2003 9:51 AM CST

Sophia and Olivia had a great time with Barney. They hugged him and told him they loved him, it was so cute. The show was fun. The girls were up dancing and singing with the show. Olivia was surprised that Barney talked during the show because he did not talk to them when they met him up close she thought he could not talk. I told her he was saving his voice for the show. They had such a great time. Check out the new photos.

Sophia has been doing well. She goes to clinic Wednesday after Christmas other than that things are fairly normal. Mom, however, is still a bit nuts. I have been bringing Sophia into bed with me not because she is waking up asking for me, I go into her room and pluck her out of her bed and bring her into mine. I keep looking at her eyes and I think I see something but I know I do not. How long does it take to get over this? Do we ever stop looking for things?

Well the Christmas shopping is done and the girls have made thier requests to Santa. We are about ready for the big day. Wishing everyone a happy and healthy holiday.

Thank you for checking in and do not forget to look in on Carl Robinson. He seems to be doing well with his chemo but will be doing an aggressive experimental treatment in late February early March. www.caringbridge.org/mn/carcar.

Love and peace,

Diane and Girls

Saturday, December 13, 2003 7:18 PM CST

Hi Barney Fans,
What a show!!! The girls loved it. They were invited back stage to meet barney and take a photo with him, the were soo excited. It was so funny to see them dancing along and Sophia knowsa alot of the songs. if they invited her on stage she would have gone and danced up there with them. The set blew bubbles into the crowd and Sophia went off trying to catch them. They also shot glitter out of a whales blow whole and Olivia was sure to grab enough for her and Sophie. At the end they blu out long streamers and They both went after those. There were also little tiny paper hearts dropped from the cieling and didn't we grab a ton of those. I have lots of photos but I forgot my digital and had to buy a disposable on the way to the show. I should have them up tomorrow or Monday.

Tomorrow is the Clinic Christmas party with Santa. The girls are looking forward to that. Last year Sophia was in the intensive care unit recovering from tumor resection. I cannot believe it has been a year. Her Tumor resection was one year ago today. I will never forget holding her as she went off to sleep in the OR and then settling down, after making a round of calls to update everyone, to pay bills and write Thank You notes thinking she would be in for at least 6-9 hours. Not 2 hours later did the surgeone come running into the waiting room to say they were done. "God was watching over me while I did this one" were his exact words and he hugged me. It took them longer to prep and close than it did to remove the tumor. December 11, 2002 we met with Dr. Cheung at MSKCC in NYC and discussed Antibody Treatment, drove back home on December 12, and headed into Boston on FRIDAY the 13th of all days. Friday the 13th will always be Sophia's lucky day.

Please remember to look in on Carl Robinson. He recently relapsed. His mom is a powerhouse and is so upbeat. God bless them. www.caringbridge.org/mn/carcar

Love and peace,
Diane and Girls

Wednesday, December 10, 2003 8:44 PM CST

www.caringbridge.org/mn/carcar/
Look in on Carl Robinson. He has relapsed recently, pray for him to recover.

We have been having alot of fun on our down time. Friday 12/5 we went to a charity event for the Child Life Specialists in Sophia's clinic. It was part of the Kennel Club Dog Show in Boston. The girls had fun. They were teamed up with 2 dogs, a shelty and a dalmatian(of course)
Sophia would not take her hands off the shelty. They won prizes and ribbons and the hospital raised over $60,000. Then we were snowed in. The girls had fun sledding and attempting to build a snowman with daddy butthe snow was too dry. As usual we went swimming. I try to bring them at least twice a week and they love it. Today was better for snowman construction, it was warm and the snow had melted. Check out the photos of the snowman. This weekend will be busy with visiting Barney on Saturday and the Clinic Christmas party on Sunday.

I have decided to pull the girls out of all their group activities through the flu season. Olivia will end preschool on Thursday and Sophia will end her dance classes on Tuesday. I will be spending our time away from the crowds again. I am going back to those days when Sophia could not get sick because it may delay treatment due to the severity of this years flu straign. The amount of deaths the CDC "expects" is unbeleivable, more than 800 in MA alone. So when you visit if you don't mind. We'ld love to see you but please be kind. When you enter don't make me ask. Pleas wash your hands, it is a simple task.

Thank you so much for looking in on us and please continue to pray that cancer never enters our lives again. Also please pray for all the others fight this disease, it truely shows no mercy.

Love and peace
Diane and Girls

Friday, December 5, 2003 11:41 PM CST

I sat down to write about the wonderful time we had at a charity event this evening and to tell of some other wonderful news and great things in our lives but I cannot. Instead I sit her in tears for a little boy who lives many miles away from us. Carl is 4 years old and has Neuroblastoma again. He went through the same treatment as Sophia. At about the same time they were in transplant, I think I even challenged them to leave transplant before us. He has relapse with a significant amount of "hot spots". He needs your prayers as well as his family. Look in on Carl and Pray for Him.

http://www.caringbridge.com/mn/carcar

Saturday, November 29, 2003 8:35 PM CST

Hi everyone and belated happy Thanksgiving. We had a great holiday with lots of food and family. Last Thanksgiving Sophia had just completed her 5th and final round of chemotherapy and was on decadron, a steroid, for nausea. The chemo drug used in that round,cysplatin, causes nausea for up to a week after it is administered. With decadron one of the side effects is anger. I think Sophia screamed at everyone last year. This year she was very happy and pleasent, thank goodness.

Sophie had a clinic visit on Friday to recheck for her ear infection and for liverfunctions. She had her blood drawn from one arm and a flue shot in the other. Maryjo, Sophia's favorite nurse in clinic, was very sad that she would have to do that to her. She checked out fine, ear infection resolved and liverfunctions are normal. She has now been moved up to monthly checks in clinic. YAHOO!!

On December 13th Sophia will see Barney in concert. She has been invited to come to the show early to meet Barney. She and Olivia are very excited. I will add photos after the show.

Thank you for checking in on us. Pray for all the others still in teatment, they all have a tough battle ahead.

Love and peace,
Diane

Saturday, November 22, 2003 10:13 AM CST

Yes, today is the last day of her Accutane. It should have been yesterday but I forgot one morning if I had given it to her and I missed another night because she wasn't well from the ear infection. I cannot believe it. What a trip we have been on. The end of treatment, YAHOO!!!! She will go to clinic next week for liver funtions and recheck for the ear infection and then not for another month, What?? Clinic only once a month??? How am I going to do it?? I am going to have so much time on my hands I think I might have to find a hobby. I am still waiting to hear about Sophia's wish. They sent a email asking what dates would not be good for us so hopefully that means we hear soon. I am so ready to go, the bags have been packed for a month or two.

Now I know this is all wonderful, her completing treatment and going to clinic once a month but I am still uneasy. I have terrible feelings of sadness that sweep over me at the oddest times. I find myself staring out a window for 45 minutes, as I did just this morning my kids are out with Auntie Terry and I should be cleaning or shopping or something and yet there I sit staring out the window. I am getting more forgetful, like with her dose of accutane. I can't remember making plans with friends or if I have made an important phone call. Its almost like postpartum, I remember after having the girls I could not get out of my own way. Maybe I want normalsy too quick. I was talking to a Neuroblastoma Mom, almot 2 years post treatment, and she said that the psychologists should be calling 6 months after treatment not during, I think she is right. When you stop going to clinic and stop treatment you feel as if you have been left in a strange place with out money, directions, transportation and told to fen for yourself. I used to get calls from everyone and their brother about Sophia's condition and now its like the phone is broken. Its great that she is doing well and I don't have to report a million times over how she is doing but there is such a feeling of lonliness. I don't have much in common with my friends and do I really want to spend much time with cancer families. Its like being in a room with people you don't know and they all speak a different language. Another odd thing is that I have lost friends during this ordeal. Maybe people are affraid to talk to me because it may upset them because talking of her illness has become very common place to me. I am sure this will pass. It may have something to do with winter and the holidays coming I feel overwhelmed. The good thing is, although I feel sad sometimes, I think the angries are going away. So to all of you that I have offended or have been mean to over the past year and half, especially customer service folks, I am sorry from the bottom of my heart.

Sophia is still dancing and swimming and skating. She is so cute she asks everyday,"Mom, do I have dance class? or swim class? or skating class?" I am sure once the Accutane is out of her system she will be happier. She loves all of her activities but at some point during each activity she gets a bit cranky and stops cooperating. It is cute to see her get the angries sometimes as long as it is directed at someone other than me.

Thank you all for checking in on us and keeping us in your prayers.

Love and peace,
Diane and Girls

Wednesday, November 19, 2003 9:31 AM CST

We spent all day Monday in clinic to find out Sophia has an ear infection. They drew her blood to s=check for a blood infection and liver functions, that was all fine. She was started on zythromax and got the itchies so she is now on bactrum. Sophia is fine, no fever or pain.

Only 3 more days of accutane. YAHOOO!!

Everything els is great!!!

Thank you for checking in.

Love and peace,

Diane

Monday, November 17, 2003 9:19 AM CST

Yes, Santa is here already. The girls could not wait to visit with him. Sophia asked for a blue kitty and a book. Olivia asked Santa for a toy cash register. They were so excited. The man in charge of the Santa display rememberd us from the Easter Bunny, he runs both. Sophia was bald when she saw the Easter Bunny and she wsas fresh out of transplant so she had her mask on. I was very happy they remembered Sophia and were even looking for her. They made it very special for her.

Yesterday we went to mass (Sophia's first time) and they were both very good. The pastor told us they would have an annointing of the sick mass in a few weeks. I will be sure to have Sophia there. I have heard of many families bringning their little ones to healing masses but I have never heard of one around where we live. I am looking forward to her receiving the blessing.

She has been doing well only 4 more days of accutane. Last night she had a fever of 102 and complained on ear pain. So this morning we are off to clinic. She may have an ear infection. She has had more fevers over the past 3 months than she has ever had in treatment and before. i read that Accutane can cause fevers but I don't think that this is from that. We will see. Off to clinic. I will add later what the outcome is.

Thank you for looking in on us.

Love and peace,

Diane and girls

Monday, November 10, 2003 7:40 AM CST

Sophia has been doing very well. She just started her last cycle of Accutane Friday 11/7 and in less than 2 weeks Sophia will be off treatment completely. We did send a blood sample for HAMA screening on Thursday and I will find out on Wednesday if we are to return to NYC for Antibody treatment at Sloane Kettering. I doubt she is HAMA negative so I don't think we will go to NYC anytime soon.

The girls have been very busy. They love the swimming and the skating. Also notice the face painting they had done earlier in the day at the Children's Museum earlier in the day that the would not let me wash off. Sophia's Oncologist says that it is wonderful therapy for her and good therapy for me. As Sarah's mom stated on her web page you watch and drink them in "inhale the perfume". That is what you have, the great memories of today because you never know if it will be taken away again. That is true for anyone, youi never know what is aroung that next corner. Sophia was put to bed last night at 8pm, her usual time. She wasn't sleepy yet so she played in her room in the faint light from the hallway. I watched her from my room as she finished playing and climbed into her bed, arrainged her assorted dolls and stuffed animals just so, straightened her pillow, and pulled her favorite blanket up around her neck. I couldn't take my eyes off her and I laughed quietly as to not disturb the moment. I would not have missed that for the world. Had she not been sick would I have appreciated that as much as I did? Probably not.

I was with a group of moms with NB kids, some in treatment and some out, and one mom had 2 year old twins and her 4 year old is in treatment. She was worried about the twins, that her not being there would have some effect on them. I told her about the relationship my Olivia has developed with her grandfather if it wasn't for Sophia's illness that closeness would not have grown between them and Olivia will treasure her PAPA for ever.

Thank you for looking in on us. Pray that she continues to do as well as she is. I am looking forward to fighting with her as a teen, as I have been told by many she is going to get me back for all the "pinches" and yucky medicine I gave her.

Love and peace,
Diane and Girls

Wednesday, November 5, 2003 3:25 PM CST

Halloween has come and gone and Thanks Giving is on the way in. I can't believe how fast this year is going by. Sophia and Olivia are very busy these days; swimming lessons, Iceskating lessons, Dance for Sophia, and preschool for Olivia. I am happy to be out running around because we spent so much of last year stuck in the house due to low counts and I was just afraid to bring her anywhere. I am still nervous about bringing her out but I cannot shelter her forever. Also the belly aches are gone, Sophia has not complained of a belly ache since we left the hospital 2 weeks ago. I think she got me there under false pretences, she missed the ladies on 7 medical. That I don't mind.

Today we went to a small local children's museum. We were there for three hours, the girls had so much fun. I spent most of the time there just sitting and watching them play, watching Sophia play. Every experience with her is like doing it for the first time all over again. Her favorite activity was the "Ball Rally". She climbed a stet of stairs and at the top was a tube just big enough for a golf ball and the ball would follow allong ramps and tubes and curves and funnels and set off chimes and bells untill it landed in a small box at the end. She would gather up as many balls she could put in her pockets and race up the stairs put all the balls in the tube and rush back down the stairs before the balls could reach the end. She got a great workout. I think the Museum will be added to our weekly schedule.

Sophia has a clinic visit tomorrow. She will have her blood drawn from a periferal line, placed just for the blood draw and then removed. She will have her check up and then we get our 6th and final script for Accutane, how sweet is that? The treatmant will be done in 2 weeks. We will be drawing a sample for HAMA screening but I fairly certain it will still be positive. The alst HAMA screening sent to Slaone Kettering in NYC was positive more than a month after her last antibody treatment. Our oncologist in Boston doesn't think the HAMA will ever go away and if it does he feels her body will recall it immediately as she did with round 2 of Antibody treatment. A double edged sword, I do not want to return to NYC however I want to be sure I have done all I can to keep her cancer from coming back.

Thank you for checking in on us and continue to pray for Sophia and all the others fight their fight.

Love and Peace,
Diane and Girls

Wednesday, October 29, 2003 6:48 AM CST

Hi everyone,
All scan results are in and they are all clean. YEAH!! Sophie had a few days inpatient for observation last weekend as she has been having belly pain. On Friday morning, about 1:30, she woke up crying her belly hurt and was up most of the night. Friday afternoon she had a fever of 102 and we were off to Floating Hospital. They did Liver function tests, ultrasound on her gaulbladder(?) and a CT scan of her abdomen and they found nothing. Her liver functions are slightly off due to the Accutane but they say not enough to cause her discomfort. They are assuming that it is the Accutane since there was nothing els to see. She should be off the Accutane in three weeks so hopefully the belly aches stop then.

Sophia has been enjoying her dance classes and I am going to look into iceskating lessons for both girls. Today we are going swimming again this time I am bringing my camera. The girls have been enjoying their new dog, Bruno. He is very mello for a puppy and very smart. The girl's grandparents and aunt and uncle were up from Florida for a few days and the girls were able to spend a little time with some of them.

No word on a return to NYC for Antibody treatment as yet. WE are enjoying peace and quiet.

Thanks for checking in.
Love and peace,
Diane and Girls

Wednesday, October 22, 2003 7:54 PM CDT

Sophia's bonemarrow biopsey and aspiration both came back clean. YEAH. She had her injection for the MIBG, scan specific to her cancer, today and the scan will be tomorrow. I will update you on the results when I hear. We have been having tons of fun; Friday we went swimming at Grammy's work and then went to the Circus over the weekend, dance class on Tuesday and a Halloween Party at Olivia's preschool tonight. I am anxiously awaiting the word on Sophia's wish trip, hopefully we hear soon.

We have a new addition to the family, a new puppy. He was born on 5/22 and his name is Bruno. A mega spotted Dalmation. I hear that makes them less desirable to have lots of spots but I think he is sooo cute. I made the mistake of bringing the girls into the pet store Friday night and Sophia just outbursted with full pout that she wanted a doggy. What could I do? How could I say no?? He is a good boy and very calm, I hope.

Thank you for looking in on us.

Love and peace,

Diane and Girls

Wednesday, October 15, 2003 5:11 PM CDT

Hi everyone,

Sophia had a Bone Marrow aspiration and biobsey last week, we are still waiting for results on the biopsey but preliminary findings on the aspiration are clean. Our next scan is the MIBG, a radioactive isotope that targets Neuroblastoma cells will be injected into Sophia next Wednesday and the scan will be done Thursday. She will have to take iodine by mouth for several days after the injection to protect her thyroid. The radioactive isotope will harm her thyroid if she does not take the iodine and it tastes horrible.

Saturday we went to a Cranberry festival at Edaville Railroad in Carver. They had carnival rides and some games Olivia had fun but Sophia cried on the ferris wheel. She has been cranky due to the accutane and she was starting to have a belly ache. They both enjoyed the train ride. On monday we spent the day in Boston. Sophia and olivia saw the wonderful clown that came to her birthday party and he made them great balloon hats. After we went to the aquarium, we had a great day. She has been enjoying her dance classes on Tuesdays, she gets so excited. I am glad she enjoys it, the excercises are good therapy for her to help her regain strength and ballance. Hopefully on Friday we will go to the pool again, the girls love to swim.

Sophia has been having some abdominal pains recently and we are not sure why. It is usually in the middle of the night so we are all awakened by her screaming her belly hurts. I beleive it is due to the accutane but her liver functions are fine and her other organs seem to be working normally. I am waiting for it to happen durng the day so I can take in to clinic with going through the ER, we do not want a needless hospital stay. The pain always subsides and she has normal activity and appetite so we are not too worried, yeah right.

I will update again when I have the results from the biopsey. Until then pray all is quiet.

Love and peace,
Diane and Girls

Wednesday, October 8, 2003 9:42 PM CDT

Hi everyone,
Check out the photo of Sophia's birthday cake. They did a beautiful job.
WE finally went swimming, and she had such a blast and bad bad mommy I forgot the camera. She screamed and laughed and her sister had a great time too. On tuesday she had her second dance class they are all so cute. Sophia hates near the end of the class They all have to take off their shoes to do some other steps. She wants to put her shoes back on. She also follows the teachers around the room and asks "what are you doing?" Part of having undevided adult attention for over a year.

Sophia has a clinic visit tomorrow to start her accutane for round 5, only one more after that. The angry medicine will be gone, yeah. SHe will also have a bonemarrow aspiration. It will be a week for the results, pray it will be clean.

I have joined a group of families from Massachusetts who have survived Neuroblastoma, its called the Friends For Life. They are working on raising a million dollars for an endowment to a hire research fellow at Dana Farbers Childrens Hospital to research Neuroblastoma only. Dana Farber has also collected tumor samples from every Neuroblastoma in the world for clasification. I hope this will bring us closer to a cure. Too many angles this month from this disease.

Its now 11 pm and I am going off to bed, we have a busy day tomorrow.
Love and peace
Diane

IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
I want your Lunch money, all 10 million of it!!!

I am joing with other neuroblastoma parents in an effort to help Sophia and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of pediatric cancer and 15f deaths. For children who are diagnosed after one year of age (as Sophia was) there is no known cure for this disease. The survival rates are pathetic.

Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of pediatric cancers. Breast cancer alone receives as much from NCI. Of this $30 million, neuroblastoma research receives only a small percentage.

We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.

You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Sophia Donnarumma in the following ways:

* online (it is a secure site) by clicking on the link below
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108

Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Sophia and all of her friends who are fighting this monster with so much strength and courage.

Saturday, October 4, 2003 9:09 AM CDT

IMPORTANT ANNOUCEMENT OCTOBER 1, 2003
I want your Lunch money, all 10 million of it!!!

I am joing with other neuroblastoma parents in an effort to help Sophia and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of pediatric cancer and 15% of deaths. For children who are diagnosed after one year of age (as Sophia was) there is no known cure for this disease. The survival rates are pathetic.

Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of pediatric cancers. Breast cancer alone receives as much from NCI. Of this $30 million, neuroblastoma research receives only a small percentage.

We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.

You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Sophia Donnarumma in the following ways:

* online (it is a secure site) by clicking on the link below
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108

Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Sophia and all of her friends who are fighting this monster with so much strength and courage.


Happy weekend. Sophia is still HAMA positive, meaning she still has the immunity to the antibody treatment. We will not be in NYC anytime soon. My luck she will be HAMA negative late January and there will be a blizzard in NYC that week. Sophia has another cold, she caught Mommy's cold. It seems that I have been wiping assorted noses for a month. How great is life? I'll take wiping a million noses over what we had over the last year+.

Sophia is siting on a stool singing "no more tubie, no more tubie." Ya think she is happy to be rid of the tubie? We were at the park the other day and she was so excited to go down the slide on her belly. She went down the slide yelling the same chant "NO MORE TUBIE!" Other moms at the park were looking at herwondering what the heck she meant, wonderful little secret.

We still have yet to swim, between all the colds flying around us we haven't been able to get to the pool. Maybe Monday.

Sloane Kettering requested all scans be done on Sophia, yeah. Floating only does a CT scan for rechecks. NYC wants bonescan, MIBG, and bone Marrow on top of the ct. I don't know why Sophie's hospital only does ct scans. In talking with one of the nurses she said her cancer can come back anywhere in her body, this I already know, but knowing that one would think they would do more scans.

Please copy the top half of my journal and send it to everyone on you email lists. We are trying so hard to iradicate this horrible disease. Not that this disease should take presidence but look at the stats on it and other cancers have their own foundations. we hope this chain letter hits millions.

Thank you.

Love and peace,
Diane and Girls

Wednesday, October 1, 2003 4:48 PM CDT

IMPORTANT ANNOUCEMENT OCTOBER 1, 2003

I am joing with other neuroblastoma parents in an effort to help Sophia and all of her friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age (as Sophia was) there is no known cure for this disease. The survival rates are pathetic.

Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.

We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.

You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Sophia Donnarumma in the following ways:

* online (it is a secure site) by clicking on the link below
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108

Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Sophia and all of her friends who are fighting this monster with so much strength and courage.


Hi, I hope to have new photos today. We have been a little busy lately. Sophia started dance classes and loves it. She thinks she is the only one in the class, I wonder where she gets that from. She has little tiny tap shoes and a tiny body suit. She looks so cute. During class the teachers had the girls take off their tap shoes and Sophia fought it tooth and nail she did not want to take off those shoes. I am so glad to have her in the class, thank you Kathy, she will build strength and balance she lost during treatment. It is so funny to see how all the little ones who are going through treatment for NB all run the same and walk the same.

We went apple picking last weekend. Sophia and Olivia had fun climbing the ladders and picking apples. We made caramel apples and have great plans for applesauce, apple crisp, aple pie and apple cake. Mommy now has a bad cold so all that will wait. To finally be back to some what normal exsistance.

Sophia has yet to go swimming. I wanted to wait for the whole created when the IV line was pulled completely healed. I wanted to take them today but mom is not feeling up to snuff so we will wait for Friday to swim. Tomorrow Sophia has a recheck at clinic from the bacterial infection in her blood. She finished her antibiotics last night and is doing fine.

HAMA screening went out last week. We are waiting to hear from NYC if she is negative. IF she is negative I may go back to NYC for one more try at the antibody treatment. I am still not to sure about it. I am scared about side effects.

Mom applied to go back to college today. YIKES. I can't wait to get back. I will hear in about a month. Until then I will fill out forms for financial aid. I am going back after about 7 years off, the major will be Communication Disorders. I am looking forward to it, I know it will be good for me and alot of fun.

Thank you for checking in. I will update once I hear from NYC.

Love and peace,
Diane and Girls

Wednesday, September 24, 2003 1:34 PM CDT

Hi everyone, sorry it has taken so long to update the page but we have been very busy. The Lemonade Stand did ok, $700.00 for the Alexandra Scott's Lemonade Stand Fund. I wish it could have been more but there were 2 other venders at the fair selling Lemonade. After the the fair I went away for a few days to New Hampshire. It was so relaxing and prepared me for the next week. Sophia had a fever and nausea on Saturday night, her first since the start of treatment. She was brought to Floating Hospital and admitted. A blood culture drawn on her broviac line grew a gram negative bacterium so we were in for the duration. She has not had any symptom of sepsis since the admittion and is quite happy playing with all the kids and once again being the center of attention. We were scheduled to have a CT Scan today out patient so it was rescheduled as inpatient, you would think that it would not matter. She slept right through the scan. Now that the scan is done and providing all is well, which it will be(pray), the broviac will be pulled tomorrow. YAHOOOOOO!!!!! I cannot wait to get the H*%$ out of here. I have already met to new comers to the oncology world and I don't want to get involved. I always want to try to make everyone better and I never can.

We have met with the Make a Wish Foundation for her trip to Florida to see Mickey Mouse. We hope to go before the end of the year and with out the line we can go swimming. I am looking forward to a more normal existance.

Thank you all for checking in on us, God bless.

Love and peace,
Diane and Girls

Friday, September 12, 2003 8:36 AM CDT

Hi everyone,
Sophia had a clinic appointment yesterday for a simple blood draw and a quick checkup. We were there for over 3 hours. I should not complain but Sophia was the only patient there and it took the 2 hours to draw her blood and another half to see the Doc for 10 min. I finally had to rush them so I would not be late for Olivia at the end of school. She has to start back on the accutane and her dose was increased since she has gained some weight. Otherwise she is doing well. I drew some blood to send off to NYC for Antibody testing if she is HAMA negative we may go back for another treatment, I am still on the egde on that decision but leaning more towards not going.

Sunday, September 14 we are having a Lemonade Stand for Cancer research at a local carnival. The inspiration for the stand came from Alexandra Scotts Lemonade Stand, a young girl who has been battling Neuroblastoma for over 6 years. She has raised over $130K for cancer research since her first sale 3 years ago. Autie Annes Pretzel Store is sponsoring our Lemonade Stand. Hopefully it won't rain. See a link to Alex's Lemonade Stand bellow.

Thank you for looking in on us.

Love and peace,
Diane

Monday, September 8, 2003 7:49 AM CDT

I did it. I biked all 50 miles (actually only 45). It was a great ride through the Northshore. Most of the ride followed the shoreline. The views were spectacular. My legs ached after the ride the Sunday morning I was fine. It was a fun day especially seeing some of the Docs in bike shorts. (Hahaha)

Sophia is doing well, rolling on into the Horrible Threes and driving me crazy. She starts a dance class on the 16th of September. I can't wait to see her in Tap shoes. She was so excited when we visited the dance studio.

We are getting things ready for the Lemonade Stand on Sunday. We are trying to get as much press coverage as possible, thank you Scott family. The money raised will go to the Alendra Scott Lemonade Stand Cancer Research Fund. I hope we raise alot of money for the fund.

Monday, September 1, 2003 7:16 AM CDT

HAPPY BIRTHDAY SOPHIA MARIE
Above: Sophia, Olivia, Mom and Dad

Today is the big #3. I don't have words to express the joy I feel today. She is such a wonderful girl. So many don't make it through this disgusting disease and she is my miracle.

I have been following a little girl in Arizona with Neuroblastoma. She had the same birthday as Sophia. I say had because she lost her life on Saturday 8/30/03 late in the evening. She, Madison, would have been 4 today. It is so sad that a 4 year old has to worry about the people she will miss and those that will miss her. Madison asked her mom last month if she could celebrate her birthday a month early. Immagine your child asking to such a thing. A woman with a child suffering with Neuroblastoma sent an email asking how we can beleive in God with all the horror we experience. She wasn't sure if she should tell her son that there is a better place with no cancer as she did not believe. When I look at Sophia and her progress over the last year + I know that all the prayers that have been sent her way have helped to make her better, helped make me stronger. Please take a minute to look in on Madison's family. www.madisonelizabeth.net/madispage.html

Pray that we will have 80 more glorious birthdays with Sophia Marie.

Love and peace,
Diane and Girls

Wednesday, August 27, 2003 1:51 PM CDT

Wel Sophia and Olivia had their day. What a day it was. I will upload photos as soon as I can. Her birthday party was wonderful, she and everyone els had a great time. That is exactly what I wanted for her, a great time. Sophia and Olivia loved the Clown who made the best balloon hats. Elmo showed up and all the kids attacked him(her). Towards the end of the day a puppetier showed up and all the kids were mesmorized. Sophia and Olivia were invited up to help direct the puppets. We raised so money for Sophia's Family First Fund at Floating Hospital also. I asked that in lue of gifts that a donation be made in her name. Just a great day.

Sophia finishes her 3rd cycle of accutane tomorrow and we are off to clinic for blood tests for liver functions and electrolytes. Accutane can damage the liver and can reak havock on the lytes. We will again draw blood from her arm rather than the central line in her chest in preparation for the time when the line is no longer there. She is doing very well at home. Her 6 month post tranplant scans are due the first week in September which will be done in Boston. MSKCC sent me an email reminding us the the scans are coming due but I want to stay home. The antibody treatment is not working out for her so I think I am going to be satisfied that I have done all I can for her and try to get life back to normal. I did call Dana Farber in Boston to compare the types of scans they do for Neuroblastoma to Floating Hospital, hopefully I can get Floating to do more than just a CT scan.

Thank you for checking in on us.

Love and Peace,
Diane and Girls

Friday, August 22, 2003 8:05 AM CDT

Another hot day today. We will be spending most of it indoors. Sophia is unable tollerate the heat since her diagnisis. I have been told by her Onc that there is no association of the heat intollerance and the disease.

We missed the "Duck tour" ride around Boston on Wednsday because the tickets were sold out. The rides start at 9 AM and run every half hour until 6 PM and every ride was sold out. The girls were disappointed but we went out to lunch instead and that made their day. We stopped by Floating Hospital to pick up posters, registration forms and pledge sheets for the upcoming "Cycle For Life". I plan to pass them out at Sophia's Birthday Party on Sunday.

While at Floating I saw Kevin through the double doors of the transplant room. He looked sleepy but otherwise OK. He received just over 9 million stem cells yesterday and did very well. His mom said he was a little sick but he did well and has already started on dilaudid for pain management due to the sores that are starting in his GI tract. He is tollerating the pain med so much better than Sophia, thank goodness mom. He is going to do just fine.

The Party of the Year is on Sunday. Sophia and Olivia have their party dresses. We will go out today and pick out a cake. Gift bags are filled and Pinatas are stuffed to the top. All totalled 150 guests are expected, I guess we went a bit overboard, I consider this her: 2nd and 3rd Birthday, Haloween, Thanksgiving, Christmas, Easter and I just plain feel better Party. A fund has been established at Floating Hospital in Sophia's name to help families of children treated in the Oncology Clinic. Anyone wanting to make a donation may do so using the following address:
Sophia's Families First Fund
New England Medical Center
Box 014
C/O Dr.Lawrence C. Wolf
750 Washington Street
Boston, MA 02111

Thank you for checking in un us.
Love and peace,
Diane and Girls
I will update you all on the Party next week. I will hopefully have photos to add as well.

Wednesday, August 20, 2003 7:37 AM CDT

Hi Everyone,
It has been a very uneventfull week. Sophia has been taking her Accutane with very little complaint. I had been piercing the geltab with a needle and drawing the gell up into a syringe but I loose some in the needle and in the syringe as it is such a stickey med. She will let me pierce it and squeeze the contents into her mouth, good girl. She gets just about all of it. I have tried to get her to swallow M&Ms to get used to swallowing pills but she just wants to chew them up. She just wants to get to the chocolate inside, now where would she get that from? I have not heard from NYC when we should draw her blood and send it for HAMA testing(the immunity to the antibody treatment). Again we wait. I am not sure that we will go back even if the immunity goes away. Some of the kids are having problems with there red cells and platelets, Sophia has not needed blood products since MArch and I don't want her to start now.

Today we are going into Boston to go ride on the "Duck Tours" boat/bus ride. It is a boat shaped bus that rides aroung town and then right into the Charles river. The girls will love it. I hope to stop into Floating Hopsital to see a few old friends. Kevin, relapse of hepatoblastoma, is on his day-1, day of rest today. He will get his stem cells tomorrow. He has been doing this since he was 9 months old, he is now almost 3. I met his mom right after Sophia was Diagnosed and she has been inpatient with her Kevin almost evertime I was in with Sophia. She is such a strong woman and she has helped me to deal with Sophia's Illness. I appreciate all she has done for me, without her even knowing she was helping me. Kevin has some other health issues from a preemie birth as well. Pray for a fast recovery for him.

Thank you all for checking in on us and for all your prayers.

love and peace,
Diane and Girls

Friday, August 15, 2003 4:27 PM CDT

Today was a quiet day. We did not do much. We spent a few minutes at the park but the girls were to hot. Sophia especially has developed a sensativity to the heat. I spent most of the day fiddling on the computer trying to get the new photos up and getting things ready for the party next weekend. The girls are going to have such a great day. I can't wait for it. I hope all those stranded in NYC at the RMH make it home, it's bad enough being in NYC for treatment but to be stuck there with no electricity. I am glad we got sent home early from MSKCC, if not we would be stuck there too.

Check out the link for the Cycle for Life. The bike ride is to raise funds to pay for the Childlife specialists in the Oncology Clinic at Floating Hospital for CHildren. The Childlife specialists help children deal with uncomfortable and scary procedures and treatments. They also saved me for an hour each day while Sophia was inpatient. I hope you are able to join us for the ride.

Love and peace,
Diane and Girls

Thursday, August 14, 2003 5:58 PM CDT

Can any of you recall where you were or what you did a
year ago today? A few who know me well enough may
recall this day without hesitation. One year ago
today my baby was diagnosed with Stage IV
Neuroblastoma. One year ago today my Sophia stopped
being a baby and matured well beyong her almost 2
years. One year ago today our lives changed forever,
I turned to stone. How blessed we are to have had
this year. We are so thankfull to have her with us
and look far into her future at the many years we will
have with her. I look apon her every day with wonder
and amazement, how she could be so strong to through
all she endurred. As I turn and look back at last
year I see dispair, heartache and tears but looking at
today I see hope, happiness, health and tears of joy.
Thank you all for your thoughts and prayers and your
support, I have felt your hands on my shoulder.

We spent the day in Clinic, when I realized what I was doing today I almost dropped. This day was truely better than the first time we entered the Oncology Clinic at Floating Hospital for Children. She is fine and back on Accutane for 2 weeks. WE discussed removing her line after her scans in September, YAHOO. I can't wait to bathe her on a regular basis.

Keep looking forward.

Love and peace,
Diane and Girls
PS don't forget the Birthday Party. 8/24/03 at 11 AM
Sheraton Braintree. Email me you're coming.

Monday, August 11, 2003 9:02 AM CDT

Hi all,
We are home and had a great weekend. The girls enjoyed the Roger Williams zoo on Sunday and Olivia had a wonderful time in Maine with Auntie Terry and family. She was able to go to the beach for the first time this season, I won't bring Sophia anywhere that she is not able to participate.
She never had any pain from the Antibody treatment so they stopped it on Friday, a week early. We will start Accutane this week. She is scheduled to have blood drawn on Thursday and I am going to try a draw from the arm rather than the Briviac, wish us luck. I want the Broviac line out of her ASAP so we can get back to a more normal life.
As for the Antibody treatment, I am not sure we will continue with it. If we are going to have the same reaction(immediate HAMA recall)then I don't see the point. I have also presented a few questions to the team at MSKCC. I am concerned that some of the kids need blood transfussions during the Antibody treatment. There is a boy whose immune system is killing off platelets due to a reaction from the Antibody treatment. Sophia has made a huge come back from treatment, her blood counts are better than mine, I am afraid of taking steps back. Another boy came started treatment more than a month ago with high platelet counts and they have dropped over 100k and will not go up. Here again I am struggling with the descision of what to do about her treatment.

We will enjoy our time at home. I am hoping to get her wish set up for November. With coaching when asked what her wish is she says, "Mickey Mouse!". Maybe in November we can get to Disney.
Thank you so much for checking in and if you can make the Birthday Party we would love to have you.

Love and Peace,
The Donnarumma Girls

EVERYONE IS INVITED!!!!!!!
It's here, Sophia Marie's 3rd birthday. We are
planning a celebration. We have been blessed with the
good health of our little girl and want you all to
share in our joy. Please come to the Sheraton Hotel,
Forbes Road, Braintree at 11:00 AM August 24, 2003.
There will be food, clowns, Elmo, activities and more.
We welcome anyone and everyone, bring your family and
friends. We want Sophia to have the best day. Please
take this to heart, we request that you do not bring a
gift if you feel compelled a donation may be made to
"Sophia's Families First Fund". The fund was
established at Floating Hospital For Children to help
families battling cancer pay for accommodations, meals
and other charges incurred during their child's
inpatient stays at Floating. Please RSVP via email on
or before August 18,2003 with the number of guests.
We greatly appreciate all your thoughts and prayers
for our child's good health, the power of prayer is
incredible. We sincerely hope you are able to attend.

The Donnarumma Family

Wednesday, August 6, 2003 1:01 PM CDT

Hi everyone. Sophia is not having the pain expected with her treatment. Dr. Cheung will continue treatment until Friday and if she continues to have no pain we will stop and go home. I am not sure why she is not having pain. A blood test done 2 weeks ago showed she was HAMMA negative, the immunity was gone. I wanted anothe rblood test done on Tuesday but it was too early, HAMMA screnings are only done on Tuesdays. I will let you all know when we know. Thank you for checking in. Diane

EVERYONE IS INVITED!!!!!!!
It's here, Sophia Marie's 3rd birthday. We are
planning a celebration. We have been blessed with the
good health of our little girl and want you all to
share in our joy. Please come to the Sheraton Hotel,
Forbes Road, Braintree at 11:00 AM August 24, 2003.
There will be food, clowns, Elmo, activities and more.
We welcome anyone and everyone, bring your family and
friends. We want Sophia to have the best day. Please
take this to heart, we request that you do not bring a
gift if you feel compelled a donation may be made to
"Sophia's Families First Fund". The fund was
established at Floating Hospital For Children to help
families battling cancer pay for accommodations, meals
and other charges incurred during their child's
inpatient stays at Floating. Please RSVP via email on
or before August 18,2003 with the number of guests.
We greatly appreciate all your thoughts and prayers
for our child's good health, the power of prayer is
incredible. We sincerely hope you are able to attend.

The Donnarumma Family

Sunday, August 3, 2003 9:04 AM CDT

Hi everyone!
We are on our way back to NYC. We leave tonight and she will start antibody treatment on Monday morning. She has had a great few days at home. Sophia finished her 2nd cycle of accutane without a problem.

EVERYONE IS INVITED!!!!!!!
It's here, Sophia Marie's 3rd birthday. We are
planning a celebration. We have been blessed with the
good health of our little girl and want you all to
share in our joy. Please come to the Sheraton Hotel,
Forbes Road, Braintree at 11:00 AM August 24, 2003.
There will be food, clowns, Elmo, activities and more.
We welcome anyone and everyone, bring your family and
friends. We want Sophia to have the best day. Please
take this to heart, we request that you do not bring a
gift if you feel compelled a donation may be made to
"Sophia's Families First Fund". The fund was
established at Floating Hospital For Children to help
families battling cancer pay for accommodations, meals
and other charges incurred during their child's
inpatient stays at Floating. Please RSVP via email on
or before August 18,2003 with the number of guests.
We greatly appreciate all your thoughts and prayers
for our child's good health, the power of prayer is
incredible. We sincerely hope you are able to attend.

The Donnarumma Family

Monday, July 28, 2003 3:19 PM CDT

We go home tomorrow!!!

Sophia has done well with the radiation therapy, even the fasting has gone ok. Her last treatment is tomorrow. She has no side effects from the radiation as of yet. It can be up to 2 weeks for side effects to show but, asside from lowered blood counts, I don't expect her to have any discomfort. She has been having fun here with her sister, and they have been driving me crazy.

A charity sponsored a cookout at the Ronald McDonald House Sunday night with a face painter and a characturist. A surprise guest showed up and made Sophie and Olivia very happy, Elmo. They were all over him, none of the kids could get near him. Sophie and Olivia had a characture done, they are at the beach hugging eachother it is so cute. We will leave Tuesday afternoon right after her last radiation treatment. I rented a car for the trip, cheaper and faster than the train, hopefully faster. I can't get home soon enough. Don't forget we will be going back her next cycle of Antibody treatment on Monday, 8/4/03 and Olivia will stay home with family.

Thank you for checking in.

Love and peace,
Diane

Wednesday, July 23, 2003 4:09 PM CDT

Hi all sory for the delay. I am in NYC with both girls. I had a few days off and came out this afternoon. Sophia started the radiation on Monday morning and is fine. I spoke to Dr Wolden, Radiation Oncologist at Sloane-Kettering and I was able to make the decision to come. While I was speaking to her over the phone I suddenly felt the weight lift off my shoulders. The decision felt right. She has not had any side effects from the treatment. She is now on her Accutane and her face is drying out and she is a little bit angry. We will be back home on Tuesday or Wednesday. Have to run, kids are tearing apart the playroom. Love and peace, Diane

Friday, July 18, 2003 7:07 AM CDT

Hi everyone, thanks for checking in.

We are not going to NYC on Monday for radiation. Dr
Wolf, Sophia's primary Oncologist, kind of scared me on Wednesday. He told me basically we would be hurting her by radiating her orbits. There is no data substantiating the decision to do radiation in that area. They would be adding unnecessary toxicities to her by radiating her. He
said that Neuroblastoma does not relapse in the
orbital area. I don't know what to do now. He said
that Dr. Kretchmar, another Doc on the team, is a nationally recognized expert on Neuroblastoma and does not agree with my decision to radiate. I sent an email to the team at MSKCC asking for data supporting their decision that I can bring to Dr Wolf, hopefully that will help me. So here I am again not knowing what to do. I am so tired of making decisions about her care, I am afraid of making the wrong one. I am starting to regret even finding MSKCC. It is a wonderful hospital and they are experts but they have added so much more stress, Sophia would be done with treatment and on her oral chemo if I had just stayed in Boston. I feel like I am being pulled in so many different directions; Boston wants her to follow their schedule of accutane every 2 weeks and IVIG every month to boost her immune system they call all the time wanting her to come in to clinic, on the other hand MSKCC wants her to follow their schedule 2 cycles of antibodies before accutane and no IVIG and radiation to the orbits, and then there is my schedule I want everything right now even miracles and I want to do everything to make her better but I don't want to hurt her.

Aside from Mommy's insanity, Sophia is doing very well. She went to a small birthday party for a little friend, Liberty, She was so glad to be there. When the invitations for her and Olivia came she said "can I go too". She was so happy when I told she could go. This was her first birthday party since November 2002. She has been excluded from so much, she is so happy to be able to do things now. We just need to get rid of that Broviac line in her chest and she can swim and go to the beach and enjoy the summer like all the other normal little kids.

Mommy is going on a dinner cruise around Boston Harbor this weekend with work, not that I have worked since Sophia got sick. I am also going away to the Cape for a few days. I am so glad to get away. Also this weekend is the PANMASS Challenge, a bike ride to raise monyey for cancer research, and the route passes right by my house. I hope to make a sign and maybe get out to wave the riders on.

Enjoy your weekend, I hope to.

Love and peace,
Diane

Friday, July 11, 2003 11:58 AM CDT

What a week. We are at the mercy of hospital scheduling. We were told we will most likely have to be at MSKCC for radiation Wednesday of this week. On Tuesday train reservations and RMH reservations were made and bags were packed and at 4:55 pm, just as we were getting ready to head off to the train station, we found out we were not going. We should start radiation on Thursday, so I moved the RMH reservation to Wednesday evening. Wednesday morning I called radiation Oncology and was told that Sophia's treatment was moved to July 21. Again I called to cancell the reservation to RMH and rescheduled to July 20. This will be OK as long as Sophia tests HAMA positive, if she if HAMA negative then she will start antibody treatment and again the radiation will have to be rescheduled.

Sophia is doing well, running, playing, eating, and driving me crazy. She is having fun playing with her sister, Olivia. I almost wish we did not have these long stints at home, Olivia was used to my being gone with Sophia. Now that we are home for so long she has a hard time with our leaving her. Although, she does get over it as everyone spoils her a little.

I got word this week that a boy from Sophia's hospital has relapsed. He had stage IV neuroblastoma and was done with treatment. He had his port removed the same day Sophia had one of her broviacs removed. A golfball sized tumor was removed from his neck on Wednesday. I am quite sure he will be brought to MSKCC for a form of antibody treatment. There are several different trials for the antibody treatment depending on where the child is with the disease. It is devistating to hear this, he was doing so well. It is a reminder that you have to enjoy every day you have with them. It is remarkable to me how many people think that just because she is in remission that she is out of danger. There is a 50% chance of recurrence with in the first year, I will relax a little when that year is up.

Love and peace
Diane and Girls

Saturday, July 5, 2003 9:47 AM CDT

I hope everyone had a good holiday. Sophia is happy at home and doing well. Wednesday she was simulated for radiation in NYC, I will know next week when we return for radiation treatment. I will draw her blood at home and overnight it to Sloan-Kettering, they will test it for HAMA, the antibody the the drug they are injecting for treatment. I know that it will be positive as she had no pain the last 4 days of treatment. If it is positive Sophia will start Accutane, the oral chemotherapy. After the 2 weeks of Accutane I will draw her blood again and send it to be tested again. This cycle will continue until she is HAMA negative then we will return for her next cycle of 3F8 antibody treatment.

We had a great holiday. Thursday night we went to a carnival and saw fireworks. The girls went on some of the rides and loved the fireworks, too bad they are so late. Friday night we saw more fireworks in Plymouth Harbor. I am so lucky to see her enjoy these things, its like experiencing things for the first time all over again. I am reminded how lucky I am to have and how close I was to loosing her.

Enjoy your week and I will update again when we will be back in the Big Apple.

Love and peace,
Diane

Monday, June 30, 2003 7:49 AM CDT

Hi everyone. Soooo good to be home. Sophia and Olivia are back together again. They were so happy to see eachother. Sophia doesn't come to get me up anymore, she goes straight to Olivia's room. I love to lay in bed and listen to them play. Olivia always tries to do what makes her sister happy. It seems so normal when they are just playing.

Saturday was spent with Auntie Karla, Elise and Jarrod. They had so much fun and mommy had an afternoon off. Happy Birthday Autie Harriet!! Sunday Olivia and Sophia went riding on a mini-4-wheeler with daddy, another day off for mommy. I could get spoiled.

We go to Boston for IVIG and to meet with Sophia's oncologist. I want to discuss their radiating her instead of NYC. I dislike being away from home so much if I can get it done here I will. Boston did do radiation to the original tumor bed in her belly but refused to radiate her her head. She had alot of tumor growth in the orbits and the the head and would be a likely spot for recurrence.

We met so many wonderful people in NYC at the Ronald Mcdonald House. We finally met Carl, Morgan, Taylor and Christi. I have been following these little ones for many months and corresponding over the internet. You have no idea how nice it was to finally meet them. I also met a wonderful family from the midwest with a little boy a few months older than Sophia with stage IV neuroblastoma, little James. The two are at the same piont in treatment, and he has also developed a HAMA(immunity to the antibody treatment). They were so sweet together, they played monster, cards with some of the other kids, compared battle scars, and hugged and hugged eachother. They were too cute.

Thank you all for your thoughts and prayers. Sophia has truly benefitted. So many of you have been there for us and shared her life since the beginning of this, I appreciate it.

Love and peace,
Diane

Thursday, June 26, 2003 3:24 PM CDT

Hi I don't have too many opprtunities to sit at the computer, sorry for the delay in updates. We have been in treatment every morning for about 3 hours. She has developed HAMA(Human Anti Mouse Antibody), immunity to the 3F8 antibody. She has not had any pain since Monday. We are going home Friday and will return next week so she can have a the radiation points marked and she will have radiation soon after. I will be sending blood samples periodically so that MSKCC can test for the HAMA. If she tests negative for HAMA then we will return for the next cycle. Everyday I hope for pain so the treatment will do what it is supposed to do.

I will let you know how things go at home. I can't wait to be home.

Thank you for checking in on us.
Love and peace,
Diane

Saturday, June 21, 2003 6:53 AM CDT

Hi everyone,
Sorry to take so long to update. Sophia has had a hard time with the morphine used for pain during the Antibody treatment an she does not let me sit long enough in the computer room to read emails let alone update the site. I was right about the first treatment on Monday, it was a fluke. She had ALOT of pain the rest of the week. They give her a dose of morphine with an ativan chaser before the infussion starts and another once the pain starts. The severe pain usually lasts for about 30 minutes with heart rates going above 200. It starts to subside and she will fall asleep thats when I wake her up and we go back to the RMH where she sleeps for about an hour. Most kids sleep the whole afternoon, not mine. She wakes with a vengence, so angry from the morphine but not much pain. The drug induced angries usually last until about 5 or 6 pm. So we start our day at 8am and finish about 5pm, and who said motherhood is not a full time job. It is wonderfull that she does not remember the day before, she walks into clinic smiling and happy and has a huge bowl of KIX every morning at the litle table and chairs(and like her mom she thinks it belongs to her). I remember. I remember all the screams for help and for medicine. I remember the oxygen they have to give her because she tries to hold her breath because it hurts so much. I remember holding the hot packs on her belly, that's the where most of the pain is located, and rubbing trying to rub the pain away. I remember trying not to cry for her and trying to be strong for her. The thing I remember most of all is while she is going through this pain she tells me in a grunting moan that she is OK "I'm OK Mama, I'm OK." I think what the hell am I doing to her. But then I also remember all the little ones who have been in remission and the damn thing comes back and the ones who never make it back into remission. She is the source of my strength. She is such a big girl for 2.

We are home for the weekend!!!
A family who lost their little girl to cancer set up a fund for families going through the battle for cure. I was given an envelope on Friday morning with Sophie's name on it and was told it was self explanitory. I thought it was another problem with my insurance, yes I have been dealing with those last week too. The letter enclosed had a saying from the little girl, "Going to the hospital can be fun. Like going to the playroom, playing games, or watch tv. We go to the movies, Little Shop of Plaster, or Central Park.... I got chemo. It made me sick. But when I felt good I would go do something fun." Also a list of things that this little girl liked to do. It was enough to pay one way to come home so I pitched in the rest. I was trying to decide if we should come home because we are going to be in NYC for almost 4 weeks. It was going to be a rainy weekend and all the activities would be cancelled so I came home. We took an Amtrac train, an experience with a 2 year old pissed off from morphine, and we will go back on Sunday evening. Sophia is right now plaing like she should be with her big sister, Olivia. Thank you Catie Hoch.

As always thank you so much for checking in. I will try to update more often. And Maddy I am going to look for your bag next week. We haven't done too much last week because the weather has been so bad, but next week is expected to be sunny and warm. I will go to Little Italy for your Pradda. God bless
Love and peace
Diane

Monday, June 16, 2003 6:53 PM CDT

Well we made it here safe and sound. We are at the Ronald Mcdonald House in NYC. Sophia had her first antibody treatment today and I am scared to say that she did very well. She did not complain of any pain. She was given tylenol, vistoryl,ativan zofran and morphine and with all that she was just a bit sleepy. I was told at diagnosis she had a very high trol,erence for pain that may be so, I am not sure. I was so scared for her, but better to be scared and know what to expect rather than walking into it blindly. I remember being terribly scared for her second transplant, but she did well then also. this first treatment doues not dictate how the rest of the 9 treatments will go, usually the pain continues to get worse with every infussion. I will tske this easy day. she is sittng here with me helping me type and Olivia is back home with Papa and grammy.

Olivia was sad to see us go yesterday. I am glad she is so young and easily ammused. Hopefully she will not remember tthis. I am llookihg forward to our trip to Disneynext year.

Thank you for all your thoughts and prayers for Sophia, she is living proof of the power of prayer.

Love and peace
Diane

Tuesday, June 10, 2003 5:29 PM CDT

Hi everyone,

We are off to NYC on Sunday for Antibody Treatment. She will start Monday morning. I am mixed with happiness and sadness at this news. She has had all her scans and they are negative for NB but this treatment will be very painful for her and the drugs used for pain cause her to be extremely aggitated. I added a link to a site the explains the Antibody treatment for those who would like to read up on her next battle to win the war.

We finally had some sun today. I brought the girls to the park and met a woman who lost both breasts and her collon to cancer. She said she would pray for Sophia. It was nice to have someone ask about Sophia instead of staring at her. Going through this you find youself in a close knit family. Cancer understands cancer.
Send your thoughts along for an easy time for Sophia.

Love and peace
Diane

Sunday, June 8, 2003 11:39 AM CDT

Yeah!!! How nice to be in our own beds. We should find out by Tuesday when we should be back to NYC. I hope it is a week from Monday. I don't want Sophia to wait to long for treatment. She had Bone Scan, CT SCan, MIBG Scan, Bone marrow asp. and Biopsey and PET Scan last week. We have the results of the MIBG and the Bone Scan, both negative. The rest we should have by Tuesday. Sophie is doing very well, loaded with energy. She still shows some side effects from the accutane. She is very emotional. Dr K at MSKCC wants us to wait to start her second cycle of accutane until after the second cycle of antibody treatment. I am not sure how to explain that to the Docs in Boston. I will update everyone when I hear about her scans. I am soooooo happy to be home.

Sophia's dream Team brought in over $6,000.00 for the Harbor Walk for Floating Hospital. Thank you everyone who donated to her team as well as those who braved the rain storm to walk with us. The total raised was over $180,000.

Thank you everyone for checking in on us.

Love and peace
Diane

Tuesday, June 3, 2003 3:46 PM CDT

We made it to NYC with out a hitch, only 3.5 hours. We are staying at the Ronald Macdonald house 4 blocks from MSKCC. It is very nice and the people here are so nice also. I was able to meet DR Kushner from the NB team at MSKCC, all of the doctors and nureses here are more than kind. I have met a few parents here too, some just for updated scans and some in treatment. It is very strange to meet so many people going through such a horrible time and are able to be so nice to each other.

Sophia had her bone scan on Monday and it came back normal. She had a nuclear injection today for a NB specific scan tomorrow, MIBG Scan. Hopefully that is clear as well. Thursday is the Bone Marrow Asp. and biopsey and CT Scans on Friday. Sophia and her sister, Olivia are keeping me very busy. They tore into the Dr office today, I was so embarrassed Dr K thought it was wonderful to see them play together. Then we distroyed the waiting area in nuclear medicine. Mommy is frazzled. We are all doing well. I will let everyone know how things go later.
Thank you for all you thoughts and prayers. God bless.

Love and Peace
Diane and Girls
PS the walk brought in $180K For Floating Hospital.

Saturday, May 31, 2003 7:21 AM CDT

Saturday, May 31, 2003 7:21 AM CDT
Hi and thanks for checking up on us.
Tomorrow is the Harbor Walk to benefit Boston's Floating Hospital for Children, Sophia's Hospital. Lets all think sun. I really want the girls to be able to go. So many people have ben waiting to see Sophia and Olivia, we have been stuck at home for so long I think folks are beginning to forget what we look like. The walk has raised more than $130K and has more than 1,000 registered walkers. I was asked by the PR department at the hospital if I would allow Mike Walkom from WB56 to interview me ,AAAAHHH but I said yes.

I am a subscriber to a Neuroblastoma list service where parents can go to post questions and concerns and voice opinion about the disease, treatments, trials, etc. I receive a post from a mom of a girl diagnosed with NB in 99 went into remission, relapsed in 01, went into remission, and has now relapsed again. She said her daughter hasn't a care in the world but she is devastated as would any mom. This is the problem with this cancer, it is so sneaky and aggressive. Most cases of NB are detectable with a disease specific nuclear scan that can detect minute traces of residual disease, Sophia was one of the l of the lucky ones to undetectable disease. Even though she had 15x8x6.5 tumor in her belly, tumors behind her eyes and 90% bone marrow involvement her test result for NB showed very little or no disease and was useless. I am hoping and praying that the Antibody treatment will help to knock out any little clusters of persistent cells.

So the Car has been rented and the bags are just about packed, we will be off Sunday evening. I am looking forward to meeting the great people I have been corresponding with fr so many months but disgusted at the way we will be meeting. We are starting out with a 5 day schedule of various scans, the big one is the Bone Marrow Aspiration. I have heard of several families who have had clear BMA from their hospital and have trace disease in the BMA from MSKCC. MSKCC tests 4 sites for their BMA where most hospitals test only 2. Sophia's will be clear. As Priscilla Grippi says "she would not dare to disappoint me". There is also the nuclear med scan called MIBG, it is NB specific. Unlike a CT which detects masses MIBG detects clusters of NB cells. I am not expecting it to work anymore than it worked in Boston, even with the more sophisticated testing equipment at MSKCC. I will send out an email to everyone to remember to think "clear BMA" on that day. Just like the good old days when you all wore your platelet hats, the new hat will be clear scans hat.

Enjoy your weekend and I will let everyone know when we arrive in NYC. I have to say that I am very stressed about this trip. I was very comfortable going by my self, but this is it the big decision has been made. SHE WILL BE FINE! We will all be fine.

Love and peace,
Diane and girls

Thursday, May 29, 2003 4:06 PM CDT

YEAH!!!! INSURANCE COVERAGE HAS COME IN FOR THE ANTIBODY TREATMENT AT MSKCC IN NYC.

We leave Sunday afternoon for the Big Apple. I am so exhausted from the stress of that worry and now a sigh of relief. She will start scans first, pray they ALL come back CLEAN. Then on to radiation. Looking forward to smooth ride all the way through the rest of her life.

We went to the park nearby since the sun was finally out for a few hours. I felt so bad, a girl younger than Sophia was being rough and pushing her I think she wanted Sophia to move out of the way so she could go down. Sophia was so upset, partly due to the Accutane meanies(which have not been that bad) and partly to do with the fact that she has not had too much exposure to little ones over the past 9 months. It was truly no big deal but it brought a tear to my eyes remembering how sick and fragile she is.

The Harbor Walk totals are up over $118K, not too bad. The Hospital sent a small story to the local paper with comments from me and a little bit about Sophia and her treatment at Floating Hospital. If I can find it I will add a link next time.

Have you all noticed I gave up the Chocolate wars these days. No more snacks for me. I may start up again NYC has a Hershey's store right in Timesquare. Then there is always the Lyndt's store on 5th or the Godiva store also on 5th. I will keep you posted. If I tally up the Chocolate wars I think Hershey bars would be the winner, surprise surprise.

Take care and God bless. As always, thank you for looking in on us. Remember to sign in the guestbook. Next week look for some photos from the walk.

Love and peace,
Diane

Tuesday, May 27, 2003 8:05 AM CDT

Good Monday morning to everyone. What a huge wash out the weekend was, glad we didn't make plans to go anywhere. Sophia has been taking her accutane with very little side effects. She seems a little bit crankier than usual but otherwise its not too bad. I am not sure how long it takes to start causing the crankies. I tried to get her to take the pill and swallow but she just chewed ad spit it out which is not so bad because she gets more of the med inside than if I squeeze it into a syringe. She put 1 pill in her mouth but will not do it again, from the syringe it is. I wish I could taste it to see how bad it is. I have tasted just about all of her meds but the accutane I was advised not to. I even got a good taste of Flagill, that one is sooooo gross. Sophia is doing so well, and she has the cutest fuzzy head. I will try and get a photo up of her new quaff.

Sophia's Dream Team for the Harbor Walk in Boston on June first has 25 members, yeah!! and we are mre than half way to the $$$ goal. I did not think that we would get as much team involvement as we have. The walk is important to me and I am glad others share feel the same.

I am awaiting word from Corp. Angel Network if we have a flight to NYC for Sunday, if not we will book our own flight. I didn't give the standard 3 week notice so we may not be able to get a flight from the C A N. This will be the first flight for Sophia that she will be old enough to appreciate or hate. Hopefully she will be ok with it, less than an hour should not be too bad.

Enjoy your Monday.
Love and Peace
Diane

Thursday, May 22, 2003 9:39 PM CDT

Hi everyone,
How do you like the rain? We can't go out anywhere, I'm going to go crazy before the weekend is through.
Sophia started the Accutane today. She gets a total of 90mg a day, 40 in the am and 50 in the pm. Her first dose was given in Clinic and MaryJo, her favorite Clinic Nurse held her on her lap and she swallowed it right down. It is a gell tab so I have to draw out the med from the tab with a syringe and put it in her mouth. She does not like the taste but she did it. Tomorrow I will try to give it to her straight from the Pill, we will see. I hate giving it to her. Now we wait and see if the mood swings start, hopefully not. We were in Clinic for a checkup, IVIG and Blood, her counts are great. I spent a lot of time with Dr Grodman discussing the Antibody treatment at MSKCC and he had nothng to say either way, which is good he did not tell me I was doing the wrong thing because if it were an outrageous treatment they would tell me. We go back next Friday for counts and electrlytes as accutane can mess with the lytes and IVIG. We are getting the IVIG a week early because we will be in NYC and they do not give the IVIG, but we don't have to have it again for a month.

Love and Peace
Diane

Tuesday, May 20, 2003 9:54 PM CDT

The weather is great. I am back home, I drove home Sunday afternoon blaring my music all the way. We can't do that with the kids in the car. I am waiting for the news on her scan schedule for June. We should be back in NYC the first week in June, after the Harbor Walk we are not missing it. We are going to fly out I will not pay to park a car that I don't need. I am working on getting the insurance coverage for the treatment, damn HMOs. I hope there will not be a problem it is well documented that insurance companies do pay for this treatment so we will see. Our insurance does not have any patients recieving Antibody treatment for NB nor any past patients. The fun never ends.

Sophia continues to do well. She has not been to see her Onc in almost 3 weeks. She will see Dr Grodman, SCT specialist, on Thursday for IVIG. We will expect to be there at lest 3.5 hours.

Thank you all for checking in on us. The more people praying for her the better. Don't forget to sign her guestbook we love the entries.

Love and Peace
Diane and Girls

Friday, May 16, 2003 8:23 PM CDT

I am in NYC and met with Dr Kramer at Sloane Ketering today. We will be out inthe first week in June to start testing; MIBG 123, CT and Bone scan, BMA, and PET scan. I am more comfortasble with the treatment it seems much less invasive than everything els she has had. I asm also glad that they are scanning her again they have more sophisticated sreening process.

I met Kelly and Carl today, adn a few other NB moms. Such kind people, a wonderful extended family. It was funny to se carl, he looked like Sophia because of the hair, or lack of. He is so cute.

Luck to Brice, I met his mom today in clinic, he starts SCT on Tuesday. His mom is very scared for him as we all are moving along this horrible rollercoaster ride. The loder you scream to get off the higher and faster it goes.

I am goingto see a show tomorrow, MAMA MIA. I am looking forward to it, OH my goodnes could you immagine a weekend away from the kids. And everyone thinks I wanted the kids to stay home so I could talk to the DR without interuption, HA!

Love and Peace
Diane
PS to all you Soap watchers, the Daytime Emmys are here tonoght, too bad I had no idea who I saw today.

Monday, May 12, 2003 7:28 PM CDT

Sophia had surgery to remove one of her broviac lines and she came out of it just fine. She was in and out in 10 minutes, if all other things were that easy. She woke up from anesthesia asking for milk and icecream. Dr. Gilchrist was even kind enough to remove a small splinter she got yesterday and would not even let me near. Harula, one of the nurses she had when she was getting radiation came into preop to see her, she is so nice. All the nurses are so kind, they are one of a kind. While we were there Kevin came in for an updated CT scan. He will be having SCT in June for Hepatoblastoma. He has had 2 recurrances, the only way to keep it away is to blast it with massive chemo. Sophia loves Kevin.

Remeber the fund raiser I went to a few weeks ago, $126k total raised so far and more coming in everyday. How wonderful is that, all for the families that are treated at the clinic.

If anyone will be in NYC at Sloane I will be there on Friday Morning, Email me and we can meet. I will be there through Sunday.

Love and Peace
Diane

Sunday, May 11, 2003 7:57 AM CDT

We have been having a quiet week, enjoying a little sun. Happy Mother's Day to everyone. Olivia woke up this morning and said "Happy Mother's Day, Mama. I love you" with a hug and a kiss. She then told Sophia it was Mother's Day and Sophia yelled "No it's NOT!!!" So Olivia said " Happy Mother's day, I love you. That's from Sophie" With a another hug and a kiss. Can you guess which one is going to take me in when I'm old and grey.

There is something wrong with the guestbook, I can't read it. I don't know if your entries will show once it is fixed if it can be fixed. I sent an email to caringbridge about it.

Tomorrow morning Sophia will have her one of her IV lines removed. Hopefully we don't have the problems like we had on March 2. She had a tiny little double lumen that had to be removed because it had been repaired too many times and she was going in for her second SCT and they did not want to take a chance with such a flimsey line. The tissue had grown around the line and it broke while they were removing it and they had to go digging for it. A small piece broke off and went to her heart. They fished it out through her groin. I know it will be better this time the line has only been in for 2 months and it is like a garden hose, not as flinsey and the other line had been in place for over 7 months.

Enjoy your day!
Love and peace
Diane and girls

Thursday, May 8, 2003 5:52 PM CDT

All is quiet, Sophia is running around as if there were nothing wrong with her. She is still a bit weak and on leg seems a little bit lazy but all in all she is doing very well. She is eating and drinking great and even asks for certain things. It is hard to believe she is as sick as she is, its easy to forget. I remember one day in the intensive care unit as she was walking around as if she owned the place and shouting orders left and right. I asked the Dr to get us up to the floor, that we were bothering all the very sick kids in the ICU and he said "Sophia is one of those very sick kids, don't forget that" She started her Bactrum, antibiotic to prevent pneumonia, last week and hates it. She used to ask for it but that was when she was taking so many more disgusting tasting drugs.

I am heading out to NYC to MSKCC (Sloan Cancer Center)a week from tomorrow to talk about Antibody treatment. I am still undecided. The pain she will experience and other unknown side effects after all she has already been through, I don't know if I can do it. It scares me to read of kids who have done as well as Sophia and still 1, 2, 6 months after treatment the bastard returns. I wish someone could sit me down and say there is a need for the treatment or there is no need.

Thank you for all your thoughts and prayers. Also for signing her guestbook.

The walk for Floating Hospital is les than a month away so check out the link and join Sophia's dream Team or join another. There are so many teams with great causes.

Love and peace
Diane

Tuesday, May 6, 2003 6:17 PM CDT

Today we went to clinic for IVIG imuneglobulin. She did very well and was so happy not to be in isolation anymore. We got the results of the scan from Monday, I think they called CT and told them I would be a raving maniac if the results were not in. Her scan of the orbits was clean. She is considered NED no evidence of disease. Thank God and her Guardian angel. Also thank you for your prayers, we would not be here with out them.

Sophia is eating up a storm. She had yogurt, milk, cheese sandwich, 3 pancakes and a piece of chocolate, go Soph. Now that she is eating more the line will definitely come out next Monday. She will still have another line left for blood draws. Now we wait for the accutane to start in June.

Only a few more weeks before the walk for the hospital, check out the link below.

Love and peace
Diane

Friday, May 2, 2003 7:48 AM CDT

Hi Thanks for looking in.
We went to clinic yesterday and Dr Grodman discontinued Sophia's IV nutrition so hopefully her appetite will pick up. Sophia's blood counts are doing great also, platelets are over 200k. We will go in for a CT scan on Monday and IVIG on Tuesday then we donot go back to clinic for 2 weeks. May 12 one of her central lines comes out the other will come out once she is finished with IV infussion meds and she can handle a peripheral stick for blood draws. We are looking forward to a quiet month before the accutane starts, I have heard from many people that accutane causes aggitation, even when taken by adults and teens for acne and Sophie's doses will be much higher. She will be on accutane for 6 months, 2 weeks on and 2 weeks off.

I met another Neuroblastoma at clinic yesterday, Stage III nonamplified(nonaggressive). He is only 16 months old and was diagnosed in December 2002. That makes 6 in some stage of treatment since Sophia was diagnosed, 3 Stage IV 2 Stage III and Stage I with a recurrance now being treated as a Stage IV. Too many.

Enjoy the weekend, even though it's going to be cold and rainy.
Love and peace,
Diane

Tuesday, April 29, 2003 9:01 PM CDT

Isn't this weather wonderful. Sophia is doing great, not eating as much as I would like but otherwise all is well. We have been to the park, out for walks and running aroung the yard doing yard work. She and her sister are having so much fun together.

Today I went and donated platelets. It was easy but I got a strange sensation from the anti-coagulants used in the collection. I had to eat tums because it does something to the calcium in the body. I felt wonderful after. I was finally able to give back. I was told in the beginning of this ordeal to wait until Sophia was stronger to give so I don't get too run down and not abl to care for her. I look forward to the next appointment. Please try to donate if you can. Platelets are only good for 5 days so they are always in short supply, even if Sophia does not need them someone els does. If you have gone and donated thank you.

Also there is still time to join Sophia's Dream Team for the walk to benefit the Floating Hospital. Check out the link below.

As always i appreciate you looking in on us and please continue to pray that we stay in remission the battle is not over yet. We have a CT scan on Monday 5/5(Cinco de Mayo)Let it be clean.

Thank you and God bless.
Love and peace
Diane

Saturday, April 26, 2003 8:51 PM CDT

"THWACK" Together Helping to Win Against Cancer in Kids. What a night!!! $95,000 raised for the Pediatric Hemetology/Oncology Department at the Floating Hospital, Sophia's hospital. A family of a boy in remission from Osteosarcoma held a fund raiser last night with over 700 in attendance. I have never been more proud to be part of something so wonderful. The live auction, I had never been to one before, was so exciting. The bidding stirred such emotion from the croud. Ricky, the boy with cancer, carved a Chess set from wood was auctioned and brought in over $3000. A local speed boat racing team donated rides on the boat for auction and the driver donated a free ride to another young man suffering with his second bout of Lukemia. The money was donated in the name of a boy,Henry, who lost a long battle to Lukemia late 2002. The boys had devolped a friendship during their many stays in the hospital for treatment. I never had the pleasure of meeting Henry, he spent the last months of his life in the pediatric intensive care unit. I saw him and his family the many times Sophia was in the unit after surgeries and while visiting little Kevin after his lobectomy.

Sophia had her last day of radiation on Friday. She said big goodbyes to the yucky room. Olivia came with us and held Sophia's had while the put her to sleep, It was very cute. Olivia kept telling her "its ok baby, its ok. They had a little party for her with icecream cake and gave her presents and also gave presents to Sophia. Everyone there is so very kind. In the PACU, where Sophia would recover everyday from anesthesia, They all hugged her and told her to be sure to come back an visit. Some of the nurses who were off on Friday came in the day before and gave her gifts. Sophia spread the I love yous all around. She asked for medicine for her belly twice today but never got sick. She has to go back to clinic on Thursday for blood but that is it. Sophia is scheduled for a CT scan on the orbitals of her eyes on Monday, they are still alittle swollen and I see a slight bruise and they are not sure why. Other than theat she is doing very well.

I have check in on some of the oether transplanters and they are doing well to; Carl, Taylor and Lina. I am off to check on Morgan now. I wish all of you the best and also the too many others doing this as well.
God bless.

Love and peace,
Diane

Tuesday, April 22, 2003 10:56 PM CDT

Sophia continues to well with her radiation treatments. She is starting to get upset leaving the hose in the morning, she doesn't want to go to the hospital anymore. especially the yucky room, which is what she calls the radiation treatment room. Today she was crying "mommy help me" when they were trying to put her to sleep. She still has an appetite too. Hopefully once the radiation is over they will discontinue the IV nutrition, she is getting very plump. The two girls have been having alot of fun at Grammy's house, they chase Papa around and call him the Papa monster. It's been like a vacation, it'll be tough to go home.

I went out tonight to a movie with Auntie Terry and KT and Sarah, we had fun. I embarassed myself at a Macdonald's when my neice did something silly and I laughed and laughed and laughed. I was very loud and obnoxious and everyone stared, so bad we had to leave. I don't know where it came from but it felt soooo good, better than a good cry. Laughter is the best medicine, I try to make Olivia and Sophia laugh as much as possible. Thank you Sarah I think I laughed about 4 years back on to my life.

Thank you for those of you who have joined Sophia's Dream Team for the Harbor Walk on June 1. We are up to 11 team members but we are still more than a month away and i hope to at least double that. I am looking forward to it, should be fun.

Check out the new photos. I tried to shrink them a little so they don't take up the whole screen.

Take care and God bless.
As we move near the end of this battle, hopefully we can put it behind and never look back, please always remember that all over there are families waking up to this nightmare. Pray for them to have the strength. We will always appreciate the love and prayers we have received these last 8 months and will continue to receive as we move forward to the next phase of treatment. She will start retinoic acid soon, another chemotherapy given orally. Then NYC.

Love and Peace
Diane and Girls

Sunday, April 20, 2003 7:57 AM CDT

Sophia is doing well and tollerating the radiation. We went out to see the Easter Bunny at the mall before the stores opened. There was no one there and they waited and watched the Bunny come from the back room. They were so excited. Sophia was worried the Easter Bunny might bite her but she still sat on his lap. Olivia insisted that she would be Ok and held her hand the whole time, it was so cute. This morning Sophia woke up calling, " the Easter Bunny, the Easter Bunny" Olivia completely forgot. Looking forward to a great day. Easter egg hunt will be after dinner and Olivia and Sophia will be the only hunters this year, they will be so excited.

Thank you to everyone who has joined Sophia's Dream Team or donated to the walk. See think on the bottom of the page to join us it should be a fun time.

Everyone, have a great day.
Happy Easter and God bless.

Love and peace
Diane Olivia and Sophia

Friday, April 18, 2003 7:58 PM CDT

Sophia is doing great. Here is an email from Kevin's mom re his surgery and biopsy.


Hello,

Just a quick update on Kevin, he had surgery this past Tuesday and they
were
able to remove
2 small areas using the scope. Kevin spent 1 night in the picu then 1
night
on the 7th
floor and he came home Thursday. The pathology report showed no
hepatoblastoma tumor in the
lesions removed from the left lung! Yeah! They think it may have been
caused by a pneumonia or a viral infection. Next week we'll meet with
Dr.
Pelidis to go over his next step, because there is the question of the
spot
on his right lung, which could be the same as in left lung but we don't
know. So more waitng, we are certainly learning patience.

So some good news!

Have a Happy Easter,


Kim, Scott, Kevin and Molly

Thursday, April 17, 2003 10:38 AM CDT

Sophia is doing so well with her radiation. She wakes up from anesthesia so easy. The nurses in the recovery room are spoiling her. The minute she comes up from radiation the TV is ready with the Telli Tubbies movie and her own pillow. She calls out for a red popsicle and they have that ready too. Nurse Marilynn and Harulla have been hitting the toy stores also, Soph gets a new toy everyday. She never wants to leave. It's nice they do that for her she does not like to go to radiation. She calls it "the yucky room". The feeling of being forced to sleep scares her and she does not like it, I don't blame her i would not like it either. She went to clinic yesterday and her blood counts are great, radiation can effect her bllod counts.

We have enjoyed the nice weather. Sophia got a new bike from daddy and loves it, again mom where's the camera. We went for walks and they made a mud birthday cake for mommy and it was delicious. The girls are so happy to be home together. Olivia has only 1 more day of antibiotics for her strep throat, yeah.

We went up to the 7th floor to see Kevin today. He is doing well. He may go home today. They are expecting to start chemo this Monday depending on the pathology report on the biopsy, hope for a miracle and the spots turn out to be calcium. He looked very good today. He was a little wigged out when he saw Sophia because of her mask, and she did not like the chest tube on him. They just stared at eachother.

Thanks for checking in
I hope everyone has a nice Easter.
God Bless

Love and peace
Diane

Saturday, April 12, 2003 7:34 PM CDT

Women of leisure today, no Dr. visits and no running around. I could have slept in but Sophia would not have that. She wakes between 6:00 and 6:30 every morning but she does sleep right through the night. The sun came out today, yeah!! The girls made mud pies(where was the camera) and we went for a walk with Grammy. Olivia played with a dead worm in a mud puddle and collected sticks on our walk. Sophia walked most of the way, she is still unsteady and gets tired but she keeps up as best she can. A friend of my moms asked the girls today where they lived Olivia answered correctly the town we live in and Sophia said, "the hospital" I can hear nurse Jamie saying Awwwe Sophie" as she reads this.
Sophia has alot of little sayings that make me laugh and cry.
"My cancer booboo not all gone"
"I want to go in my cage" (Hospital crib)
"I not pretty"
"Go away" (to Dr Rich and Dr Grodman in fun, me in anger)
"I stay and play with you" (pacu nurse,Marily sorry Jamie)
"Grrrrrrrrrrrrr" (to whom ever)
"I want to stay here" (when ever sshe goes to DR at the hospital)
""My belly hurts" (anytime you want her to do something she does not want to do)
"when I get bigga, you get smaller mama"
"Mama, Where's my TJ?"
And many others I cannot think of right now

She cracks me up with some of the things she comes up with.

I thank god I live near the great hospitals in Boston so I do not have to be away from my family and friends as many of the families that go through this do.

Please keep a prayer in your hearts on Tuesday this week as Little Kevin, Sophia's 2 year old friend from 7 med and the son of a woman with out whom I may not have been able to endure this horrible experience. He will have surgery to remove leisions from his lungs on Tuesday, his THIRD recurrance of Hepatoblastoma(liver cancer in lay terms. This poor boy has the strength of an OX and the will to live no matter what. He was 3 months premature, Diagnosed with cancer at 10 months old and had an enormous tumor removed from his abdomenand underwent chemo. One month after his chemo stopped he had a recurrance in one lung and had that lobe removed and received more chemo. He was just recently scanned and there are 4 more leisions on his lungs. The Dr feel that his best chance now iis to have the same high dose chemo that Sophia had and Stem Cell Transplant. The family was given 80-90% chance and he was treated as stage I, Sophia was stage IV. He needs the strenght of many this week. Thank you.

Love and Peace
Diane

Oh Wendy thank you so much for all your help with the walk. I can't wait to walk with you!!

Friday, April 11, 2003 9:59 PM CDT

Hi Everyone,

We are 1/3 the way through radiation and it has been some what uneventful, knock on wood. Sophia's blood counts are holding their own and she has not needed any blood in several weeks. After radiation today we went to the park with Olivia today for about an hour and Olivia was more tuckered the Sophia. I hope all will continue to go smoothly.
Thank you for looking in.
Love and peace
Diane

Wednesday, April 9, 2003 4:26 PM CDT

Sophia has been doing well with her radiationa and the anesthesia. She wakes up asking for an icecream. She has not been sick either. I think it was was a fluke thing when she got sick the other night.
Olivia gave mommy a little scare, she was complaining off and on that her belly hurt and I ignored it thinking it was an attention getter. She then complained that her arm hurt, being a paranoid cancer mommy I went straight for the neck. Olivia had a huge lump on one side, to me it was huge. I called the Doctor and brought her over. The lump was 3cmx1.5cm, to me that is big. The doctor did a strep test and then ordered blood counts. It was strep, the little bugger never had a fever or complained her throat hurt. Belly pain does go along with strep. Every little bump and bruise or pain is going to make me crazy. When does it end? When will that feeling go away?
I got the Pediatric Cancer Awareness Ribbon pins to give out to all of Sophia's Dream Team members, it is a very pretty gold pin similar to the pink breast cancer awareness pin. See the link at the bottom of the page to join Sophia's Dream Team for the Harbor Walk.
New photos from Papa's.
Thank you for checking in on us.
Love and Peace,
Diane

Monday, April 7, 2003 8:02 PM CDT

We started radiation today. She went to sleep at 9:15 Am and woke up at 9:45 am. she was fine and did very well this afternoon. We all sa down to dinner and Sophia asked for mac and cheese, I give her what she asks for because her appetite is so bad. I tried to pull the "one more bite" thing and it literally blew up in my face. She got sick. I don't know if she would have been sick either way but I felt bad. I gave her some zofran for nausea and hopefully it was just a fluke. She was fine after and was even upset that I dumped the rest of the mac and cheese. I made her a waffle and she had a few bites and some milk. She was doing so well that I thought we may even stop the IV nutrition soon. we have moved into grammy and pappa's house as they live closer to the hospital and the appointment are so early in the AM that it is easier to just stay at grammy's.

I went to a reception for the Harbor Walk the morning, it was very small just some of the other team captains and Harbor officials. I spoke about my feelings about the hospital and how they are saving my baby. I was a little nervous but this walk is very important to me.

There is a link to the walk below. She has her own website for the walk, check it out if you can.

Just a few of brave little ones fighting this horrible disease.
www.caringbridge.org/mn/carcar
www.taylorwatts.org
www.caringbridge.com/fl/lina
www.caringbridge.org/nc/morganbarnes/

Love and Peace
Diane

Saturday, April 5, 2003 7:00 PM CST

Sophia and Olivia had a quiet day. They just played and played all day. Sophia is so much happier, she is like a different child. Auntie Terry is coming over to watch a scary movie with mom tonight and bringing the pepper and onion pizza. MMMMM

Thank yous go out to all those who have joined "Sophia's Dream Team" and all of you have made donations to my team Pedi Hem/onc. All donations will go to the Pediatric Hemetology/Oncology Department.

Jamie, Eileen and Heather I did not see your names on the Floating 7 team. Maybe I could swing you over to our team. Can you tell I'm a little competitive.

There is a link below to join Sophia's Team.

Love and Peace
Diane and Girls

Friday, April 4, 2003 9:24 PM CST

Sophia had scans last friday and I got the results today and they are clean. She has no evidence of disease, in remission. YEAH. She will still complete her treatment per the protocol, radiation and retin-a. Her blood levels are coming up, platelets are 101k and her white count is 2.6, crit is 28. The doctor also agreed to decrease her IV nutrition, she is only on it for 12 hours so she will be hungrier.

Our clinic visit was about 4 hours today. She had her IVIG without any difficulty. I've heard that it can make them angry, the only thing that should make them angry does not effect Sophia. We are not due back into clinic until Thursday. I would say that was great but I still have to go in everyday for radiation.

I was invited to join a reception at the Hospital for the Harbor Walk to tell Sophia's story. THe reception will welcome Walk Officials as well as Hospital high ups to stimulate more support for the hospital. It is unfortunate that they have to try an convince oficials to support the Hospital they work for. Wait 'til they hear from me!

Please see the link to Sophia's Dream Team for the walk and register if you can.

Thank you for looking in on us and your continued prayers. This disease is notorious for becoming resistant to chemotherapy and she has responded very well, all our prayers are being heard.
take a peek at Taylor he is on day +2 after transplant and feels yucky. http://taylorwatts.org/

Love and Peace,
Diane

Thursday, April 3, 2003 3:17 PM CST

OLIVIA IS HOME!! Her cold is better so we brought her home. I think Papa was alittle glad to see her go, she can be alittle hyper. Olivia was very happy to see mommy and Sophia. We go in to clinic tomorrow for IVIG and blood counts, it will take about 3 hours for the infusion. Olivia will spend the day with Uncle Rich. Sophia has been eating moore so we will probably decrease the amount of time she is on the IV nutrition as well as the calories content. Sophia is off her pain med also, she is doing so well.

Check out the new photos, too cute.

Tuesday, April 1, 2003 7:55 PM CST

Olivia is still at Papa's house with a cold and now Papa has a cold too, sorry Papa. Sophia had her simulation for radiation today, they marked the areas to be radiated. It was easy, she went to sleep and woke up 1 hour later and was all done. They changed the drugs given to put her asleep alittle to make her wake up less aggitated, thank you. It has been so quiet with out Olivia, I can't wait until she comes home.

Please check out the links below. I added a link to The Harbor walk in Boston for "Sophia's Dream Team". The money raised will go to the Hemetology/Oncology Clinic. The other new link is for the Smile Quilt made for her. It is very cute, thank you Cindy.

We don't have to be back in clinic until Friday, she started her IVIG again. She gets gamaglobulin(sp) as a boost to her immune system to make it stronger once a week and then it will be every 2 weeks and then once a month. I really do not know how it works but it is a blood product.

Than you for checking in and signing her guest book.

Love and Peace,
Diane

Monday, March 31, 2003 7:41 PM CST

Easy day in clinic today.
Counts
crit 27 (red cells)
Platelets 94,000
ANC 1140 (Whites)
These numbers are achieved on her own. She is no longer, and has not for almost a week received GCSF (stimulates bonemarrow) her marrow is working on its own and very well. Way to go Sophia. If there was an Ironman SCT competition she would place near first.

We met with radiation to discuss treatment plan and side effects, as with all the other treatment a chance of secondary malignancy. We won't worry about that. We have to go back to Boston in the AM to get "marked" for radiation, Sophia will get a tatoo marking the spot where they will radiate her. She has to be anesthetized for this, but good news we only have radiation once a day for 15 cycles and they will most likely do it early AM. Olivia is still nursing her headcold. Maybe tomorrow lovey.

It was funny in clinic today. 3 cancer patients were released on friday and (sophia and 2 others) we were all neighbors. The same 3 cancer patients were in clinic for various reasons and again we were all in the same order as we were on the floor. Every night on the floor it was nice to depend on the same faces, it gave you something to look forward to other than chocolate.

I picked up the info for the walk and I will be sending it out to everyone as well as a local highschool, girlscouts and lions club. I will hit as many businesses as well, I want as many walkers as I can get. The higher the numbers the better press coverage will be. I hope you can join us.

Carl is headed back home this week too I think. They are all so brave. www.caringbridge.org/mn/carcar

God Bless.
Love and Peace
Diane and Girls

Saturday, March 29, 2003 9:25 PM CST

Our first 30 hours at home were great. The weather was somewhat nice and we went for a walk. It's funny that the entire time we were in the hospital she would scream anytime I would open the blind to let even just alittle light in the room, now at home I do not have blinds and the light poors in and she does not say a word. She went out with out sunglasses, I thought she would be terrible about the light. She is so smart, it's like that was her way of protesting the stay she knew she could not get out of that room so this is how she voiced her anger, maybe? What a happy girl. Sister Olivia is still at Auntie Terry's house with the sniffles, maybe she will come home tomorrow.

This morning I woke up to Sophia calling me, asking "where's my glasses" (I bought her a new pair of sunglasses). I wasn't sure where I was. I opened my eyes and saw my dresser and closed them again thinking I was dreaming. Then Sophia called "mom, where's Olivia?" in the calmest voice too. I realized where I was and got her out of her bed, she has the IV so she knows she has to wait for me to get her. This morning I thought that was funny, not knowing where I was. This evening I am mad, my baby has cancer and we had to spend the better part of the last 7 months in the hospital. I spent all of those 7 months scared for my baby. To wake up and not believe that I was actually in my own bed makes me mad. That anytime I could get yanked out of that bed again due to fever or some other complication makes me mad. I will put it behind me, this anger is a waist of good energy. But those who know me and those going through this know that the anger is always close by. I think that is why chocolate is my happy drug, and I have consumed so much of it. I think also that is why my family and friends always bring it to me, hhhhmmm are the trying to tell me something?

God bring us all peace.

Goodnight. My babies are sleeping well and now it is my turn.

Love and peace
Diane

Friday, March 28, 2003 8:00 PM CST

What a day.
We are home!!!!!
There are some new photos I added tonight. It may take until tomorrow to show in the site.

*Check out the link below for Sophia's Smile Quilt

The day started early with CT scan and Bone scan. Sophia had to be anesthetized from 7:45 to 12:30 for the procedures and had a breathing tube. she did well. She woke up a little aggitated, par for the course. I have learned how to get her to settle down easier and with out sedatives, it takes longer but it works. We got home at about 4:00 and she was so happy. Olivia had to wear a mask to see her as she has come down with a cold. I sent her stay with her Auntie Terry for a few days until she feels better. We will be back in clinic on Monday to check her blood and hopefully get the results of the Scans. CLEAN SCANS!!!!!!! We will also meet with Radiation to have her marked for the sites to be radiated, I heard they use a marker that does not wash off. She starts Radiation, if all goes weel two weeks from Monday and then will start the oral retinoic acid for 6 months, same drug used for acne but in higher dose. Go figure a drug used for acne can also help to prevent a reoccurance of Neuroblastoma.

Sophia was a little hungry and ate more than half a waffle and about half a juice box, she is incredible. She will continue her pain med until she is weined so she does not have withdrawals and I have to hook her up to an IV for nutrition as she is not eating. Hopefully her appetite increases and we can take her off. With IV nutrition there is always a higher risk of line infection, knock on wood we have not had that.

I am so wiped out, Sophie was in bed by 8:00. We are home and I will be unable to function for a few days, as always. I always seem to be in a haze after a hospital stay. Thank you Auntie Terry and Papa for getting the house cleaned for me. Also thanks for the Snickers popaples they are very good, finished the bag already.

I see many parents on the internet wondering if they should bring their children for the antibody treatment in NYC. It causes a tremendous amount of pain and the treatment could take up to 2 years for the body to develope the antibody. I wish that I had some one to tell me what to do. I hate to put her through another painfull treatment and also be away from olivia for that amount of time is hard. It's 2 weeks of treatment and 2 weeks home but between travel and testing it turns into 18 days and 10 days home.

Fair well to the wonderful nurses on 7 medical. We love you!!!

So glad to be home.
Pray for clean scans!!!

Love and Peace,
Diane

Thursday, March 27, 2003 9:45 PM CST

Getting ready to go home!!!
Papa spent the day cleaning for us so Sophia's house will be clean for her. Laundry is done and bags will be packed, and we will say goodbye. The nureses on 7 medical have made an awful experience a little less awful. I will always come back to visit them, but Iwill be glad to miss them. To never be admitted to this place again, wonderful.

Sophia had a good day today, sleepy but not cranky. She is still not eating anything but the IV gives her all the nutrition she needs. She will actually gain a little weight.

Than you Lion's Club for al the wonderful cards, Sophia enjoyed every one.

The 2nd peice is done. We now move to #3, radiation.

Before that 2 weeks of rest.

Love and peace
Diane and Sophia

Wednesday, March 26, 2003 11:00 PM CST

Sorry about missing the update yesterday, I was finishing up a book until 2 am and thenjust went to bed. Sophia has been doing great. Her ANC, count of infection fighting white blood cells, is 18444. GCSF, drug used to stimulate white blood cell growth, was discontinued yesterday. Her platelets and redcells are holing strong. Sophia even went out tonight to walk the halls, she was alittle scared as she has been in isolation for almost 4 weeks, mask gown glove and all she looked so cute. If we gout out again before we go home I will get a photo. She had a fun day, playing with Amy, a longtime friend of mine, and Carol, the Childlife Spec. She had Jamie's attention,her nurse, for most of the day, she loves Jamie. Jamie stayed after her shift was over because Sophia was in such a goofie mood she wanted to play. She only yelled at one person today, Dr Rich, one of the residents. She was laughing as she yelled at him to go away, it was so cute. We are getting ready to go home Friday, it is now Thursay so that would be tomorrow. YEAH! When we are at home I will believe it. We are scheduled for ct scan and bone scan on Friday morning, this will require anesthesia so I would not be surprised if we get held over to Saturday, maybe not. We are scheduled to meet with radiation this Monday, they want to start radiation in 2 weeks, WOW!. Things move too quick to think about anything. All in all we are good.

I had my first chocolate Easterbunny today, hershey's, yum.

All you folks in NYC must go to Time Square and go to the Hershey's Store. You can buy the largest Hershey bar I have ever seen. It is 5lbs of the best chocolate. I picked up 2 while I was out the before Christmas and gae them to the nurses on the floor and in Clinic.

Thank God for this fast recovery.
May everyone fighting this long battle do the same.

Love and Peace,
Diane

Monday, March 24, 2003 11:42 PM CST

ANC 7140
platelets 32
crit 27


Sophia is holding her own. No need of transfusion. She has started to cycle down the narcotics and she is ony on one antiviral med. She has been asking for juiceboxes too. She asked for a cheese sandwwich and when it came down to ordering it she said no. This maybe a step towards eating some, I hope. I don't like the idea of her going home on only IV fluids. She was silly today, ticklish and even tickled mommy's belly and gave me a big rasberry, something she would not be able to do if her mouth was still sore. Sophia still fell into the crankies this afternoon but she came out of it after about 2.5 hours. Hopefully with the decrease in the narcotics she is less likely to have fits.

I can almost feel my own bed. Cannot wait.

Take care all of the little fighters and their families.

Love and Peace
Diane

Sunday, March 23, 2003 9:42 PM CST

White Cells are down today. That can happen, however she is still above 2000. Her platelets have dropped a little but her red cells are up a little. She is doing exactly what the expect her to do. Sophia's pain med was pushed out an hour, she gets it every 3 instead of every 2. Also she is only on an antiviral med because of her mouth sores all other antibiotics and antifungal have been discontinued. She was OK again for most of the day but she wigged out in the afternoon, I can't wait until this stops.

Olivia and I went to see Cinderella today at the Wang center in Boston today. She had so much fun, I think she was more excited to see me and Sophia than she was to see the show. Olivia thought it was funny that we snuck out at intermission to get a slice of Pizza ax the street. The cook, I know from my many pizza breaks, asked Olivia if she wanted to help him make a pizza. She thought that was great, we couldn't because we had to get back to the show, but it was sweet. After the show Olivia got gown and mask on and went in to see Sophia, it was the beginning of her fit so Olivia was alittle nervous, but happy to see her little sister none the less.

After I got Sophia to bed I was able to see a friend who is staying at the Neely house, residence similar to Ronald Macdonald house. We met as our little ones were going through chemo together. Her boy is here on an out patient basis for chemo and just had a new baby, she is so beautiful. So bright and happy at only 3 weeks you can actually see happiness on her little face. It was nice to see a friend here.

The story below was forwarded to me by a mom here at Floating and it brought a tear to my eye, not that that is hard to do lately. It is a nice story.

At a fundraising dinner for a school that serves learning-disabled children, the father of one of the school's students delivered a speech that would never be forgotten by all who attended.

After extolling the school and its dedicated staff, he has offered a question.

"Everything God does is done with perfection. Yet, my son Shay cannot learn things as other children do. He cannot understand things as other children do. Where is God's plan reflected in my son?" The audience was stilled by the query.

The father continued."I believe,"the father answered,"that when God brings a child like Shay into the world, an opportunity to realize the Divine Plan presents itself and it comes in the way people treat that child."

Then, he told the following story: Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they will let me play?"

Shay's father knew that most boys would not want him on their team. But the father understood that if his son were allowed to play it would give him a much-needed sense of belonging.

Shay's father approached one of the boys on the field and asked if Shay could play. The boy looked around for guidance from his teammates. Getting none, he took matters into his own hands and said, "We are losing by six runs, and the game is in the eighth inning. I guess he can be on our team and we'll try to put him up to bat in the ninth inning."

In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. At the top of the ninth inning, Shay put on a gloveand played in the outfield. Although no hits came his way, he was obviously
ecstatic just to be on the field, grinning from ear to ear as his father waved to him from the stands.

In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base. Shay was scheduled to be the next at-bat. Would the team actually let Shay bat at
this juncture and give away their chance to win the game? Surprisingly, Shay was given the bat.

Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher moved a few steps to lob the ball in softly so Shay could at least be able to make contact.

The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly toward Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball to the pitcher.

The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman. Shay would have been out and that would have ended the game.

Instead, the pitcher took the ball and threw it on a high arc to rightfield, far beyond reach of the first baseman.

Everyone started yelling, "Shay, run to first, run to first." Never in his life had Shay ever made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, "run to second, run to second!" By the time Shay was rounding first base, the right fielder had the ball. He could have thrown the ball to the second baseman for a tag.

But the right fielder understood what the pitcher's intentions had been, so he threw the ball high and far over the third baseman's head.

Shay ran towards second base as the runners ahead of him deliriously circled the bases towards home. As Shay reached second base, the opposing shortstop ran to him, turned him in the direction of third base,and shouted, "run to third!"

As Shay rounded third, the boys from both teams were screaming, "Shay! run home!"

Shay ran home, stepped on home plate and was cheered as the hero for hitting a "grand slam" and winning the game for his team.

"That day," said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of the Divine Plan into this world."


Everything happens for a reason, whether it is to teach us to learn from our mistakes of from others, or to appreciate what we have and not take for granted. Eeryhthing in this world serves a purpose, we can walk away from things as we always were or a thousand times richer. It is easy to choose to walk away, I choose to become wealthier everyday. Let the ones you know and the ones you don't touch you and break down your wall. You cannot experience life just skimming the surface, you've got to go under and let your heart race as you squirm back up to the surface for air.

Love and Peace,
Diane

Sunday, March 23, 2003 0:01 AM CST

ANC 3828
platelets 44
crit 25 (she will prob need red blood this am)

Sophia had a half and half day today. She was angry the first half of the day and playful later, after a 2.5 hour nappy on mommy's lap. She looks better toda, her face seems less swolen. Sophia had actually had a juice box, the first thing she has really wanted or would swallow in over a week. Things are healing slowly. Her pain med was decreased slightly today, which resulted in the good mood. She is doing very well.

I went out to see Blue Man Group tonight. I have seen them before but I laughed so hard I loved seeing it again. I went with my sister, Terry and her daughters KT and Sarah, we all had a great time. I am taking Olivia to see Roger's and Hammerstein's "Cinderella" Sunday afternoon, I can't wait. Clinic gave us and another family tickets to the show. The tickets were donated in memory of a patient. Things like this make it a little easier; a show, a dinner, a movie, a moment of normal. How we sometimes take such simple things for granted.

I brought back a TShirt from Blue Man Group to a 16 year old boy on the floor with colon cancer. He asked me where I was going because he never sees me with my coat on and when I told him I was going to a show he asked if he could go. I told him that his IV pole would not fit down the stairs and he asked me to get him a TShirt. He will never see Blue Man Group or probably any other show, when he goes home he will go home to foster care to die. It is heart wrenching to see him in such pain and there is nothing anyone anywhere can do for him, but pray for his comfort. Pray for Sean.

I created a team for the harbor walk in Sophia's name. It is called Sophia's Dream Team. I will get the link up so people can register. 75% of funds raised will go directly to the Hemetology/Oncology Clinic the remaining 25% will go to other hospital services.

Thank you all who have donated platelets and or red cells for Sophia. As we come near the end of the need for our family please do not ever forget the many, many other little ones that you special gift will help.

Love and Peace
Diane and Sophia

Friday, March 21, 2003 6:22 PM CST

ANC is 1400
platelets 88
crit 27.2

She is on her way up. Sophia had a bad day. She woke up on the wrong side of the bed and stayed there all day. Mommy is now a little cranky. Her mouth is getting a little worse, but that is to be expected as her white counts increase they rush to the areas where the sores are. They discontinued one of her antibiotics today and will continue to take meds away as she continues with out fever.

I can't wait until I have her back. She is wearing me out. The pain med will be the last to go before we can go home, last transplant she went home on oral dilaudid and was slowly taken off. I suspect it will go the same way this time.

I am drained folks. Goodnight.

Diane

Thursday, March 20, 2003 6:42 PM CST

What a day!! ANC is 627.

ANC is the measurement of infection fighting white blood cells. The higher the ANC the safer she will be and able to go home. Her fevers have gone and her mouth seems to be healing. Her heart rate is now more normal, also. It is incredible how amazing the body is. She was more playful today also, splashing in the tub and playing games on mommy's computer.

If she continues to have no fevers they will sowly discontinue her antibiotics. She will have to be slowly taken off her pain meds. Hopeflly she will start eating again, she has not eaten since last Wednesday. Then we will go home. I was told as soon as early next week, but I'm happy with before next weekend. Still I do know that anythingcan happen so I will not be too disappointed if we are here alittle longer. What could be better; maid service daily, chef, nanny, and social hour every evening, who would ever want to leave. ARE YOU CRAZY!!! Can't wait to leave here. I love all the nurses and Doctors and I wold miss Sophia screaming at Dr Grodmman's bad jokes, but get me out.

I was very disappointed today, I had a Hershey bar and it tasted horrible. I ate it anyway but it wasn't worth the calories, such a bummer.

May god continue His watch over our little ones. Especially a new little one, may he have the strength he needs to be a healthy boy. Bring strength to his mom as she awaits the results of his tests.

Thank you for being there with us all this time. It has been very helpful to me.

Love
Diane and Sophia

Wednesday, March 19, 2003 3:48 PM CST

We have counts!!!

Sorry I did not update yeesterday, it was more of the same. She was alittle cranky and snoozy. Thanks to Grammy Betty I did get to go out. I surprised Olivia at Auntie Terry's house. She was so srprised and so happy. We helped Auntie Terry make cookies and we played a game on PBS.org, we also had dinner together. It was nice and I needed it. I got the best hugs, and the big girl did not cry when I had to go back to the hospital.

Today was a shocker, ANC of 105. I do expect that it will probably drop alittle but then go back up. She had a bad day despite the good news. She threw me out of the room at about 11:30 am and demanded Heather, one of the tech nurses, come sit with her. She then threw Heather out and stayed with Eileene, one of her nurses, until Kerry from Childlife came in and got stuck for about 3 hours. She threw everyone out who came in. Dr Grodman came in and really set her off, they all think its funny.(I can't help but laugh myself, the poor kid) She also started with the bloody noses, 2 minor ones but I expect them to get worse. I was finally able to force my way in with out too much fight and she snuggled up on my lap and has been asleep since 4:00 pm. She is a feisty little one and she does not like what these drugs do to her.

Jamie and Eileen are back, yeah!!

I am looking forward to the Harbor walk in June. I've been invited to a brainstorming meting for the walk on Friday, hopefully I can go. Anything to get my mind off Sophia's cancer.

Thanks for checking in.
Look in on Carl. Does he have counts yet???
www.caringbridge.org/mn/carcar

love
Diane and Sophia

Monday, March 17, 2003 9:50 PM CST

Hi
Day +5 And still no new counts.

Sophia's pain meds were increased again today. She does not seem to have too many mouth sores but she woke up several times last night holding her throat, not seing what is down there one can only assume that there are sores. She also complains of belly pain so there are most likely sores in her digestive tract as well. She started a blood transfussion this evening and it was stopped because she spiked a temp possibly due to a reaction to the blood. She has been running up and down with the temps for days, Dr says this is not uncommon during transplant.

Olivia, Sophia's big sister, went Icefishing on Sunday with her daddy, I hear she caught alot of fish. Today she went on a bike ride with her Auntie Terry and her cousin's KT and Sarah. Olivia saw horses and a puppy on her bikeride. I am sorry I missed it but she is having so much fun with them, it's good to have quality time away from mommy.

I broke down and had some Reeses PB cups. I only had about 8 of the little ones so that really doesn't count. Besides the protein in the PB is good for me, right?

Sleep tight everyone.
Love,
Diane and Sophia
PS I love you Olivia

Sunday, March 16, 2003 10:33 PM CST

Day +4 has come to an end.
One more day towards our trip home.

Sophia is doing fairly well. She does not have very bad mouth sores, but there are some further down. She complains that her throat hurts alot and wakes up whining. She is also not able to swallow very well. Her belly is hurting more too. The doctor has increased her pain med and I think it may have to go up again. I feel so bad, i can't see where it hurts and I can't do anything to make it go away. The biggest problem is that she appears to have such a high tollerance for pain that I am afraid that she may not be covered enough for her pain. She had some blood in her stool and thank goodness they checked her platelets, she had a transfussion this evening. She is a spontaneous bleeder and I do not want to have her in that situation. With the pain meds making her somewhat snowed she may not wake up to a nose bleed.

Grammy Betty came up and sat with her so I could run around the hospital for some excersise. She was so happy to see Grammy Betty, she had such a big smile. She even let me tickle her, but when Dr Grodman came in she smiled alittle at him that is big.

Jamie, when are you coming back?!?!? We miss you!

Hoping and praying for better days. Keep us and all others fighting cancer in your thoughts and prayers. Pray that we are able to avoid war with Iraq and all children everywhere remain safe.

Happy St. Patrick's Day.
Peace
Diane and Sophia

Saturday, March 15, 2003 11:10 PM CST

Day +3 over and done

And other seeds fell into the good soil and as they grew up and increased, they yielded a crop and produced thirty, sixty, and a hundredfold.
Mark 4:8
(borrowed from Carl's mom, Kelly on his web site)

No need to update counts they are the same. When they start to come up I'll plug them in. We had another lap day, I feel like the rocking chair is a perminant fixture. Although, I was able to convince her to snuggle in my bed for about an hour, that is the best medicine for me. She wanted to play with one of the student nurses today, Heather. She has been with Sophia since her induction, Heather was the only one Sophia would let hold her.

Aside from the rollercoaster ride on the fever train she is doing well. (Knock Knock Knock.) Blood cultures are coming up negative so far. Dr Grodman came today and got her goat up alittle, she is well enough to yell at him, and make mommy laugh.

Mommy went out on the town tonight, first time since we were admitted on 3/2. Real food, not hospital food. I almost fainted. I went to dinner with Auntie Terry to a Rockbottom, a local bar and grill. The steaktips are wonderful, although I think I would probably feel the same way about a McDonald's Burger. We talked about getting tickets to Blueman Group, I have seen it before but I loved it so much I'll see it again. When I come in from outside I have to shower and change immediately, as she is in an isolation room and I cannot chance bringing in germs to her.

Thank you all for your wonderful entries in the guestbook. I so look forward to reading them. Also for all your thoughts and prayers.

God bless all the little ones fighting the battle for life this evening, may they all emerge winners.

Love
Diane and Sophia

Friday, March 14, 2003 9:09 PM CST

Happy Friday
Crit = 29.8
platelets = 23
ANC = 00
Officially neutropenic

She has absolutely no immune system.

http://smilequilt.com/sophia.html
Check out Sophia's smile quilt.

Today was a quiet day. She slept all day, mostly on mommy's lap. Dr finally found how to administer pain meds to her without flipping her out. She is still cranky more because she is tired, shae asked to go to bed at 5:30pm. She received platelets, thanks to cousin Stephen, tonight while she was sleeping without complications. she is starting to have a scratchy throat, not sure if it is mucositis or dry room. We are in a room with a huge heppafilter and it gets very dry. Dr says he is very happy with how she is doing, so far so good.

No snacks today, it's starting to show. I think I'll have to ease up on the chocolate.

Take care and thank you for checking in.
If you can donate blood please try, there is a link you can go to the find the nearest donation center. They know us in most donation centers in MA.

Also try to join our walk in June, it will be a great time. It is about 6 miles around Castle Island in So Boston.

There will be the Cycle for Life in September as well as soon as the web site is up Ill add it to my list of links.
It's 60 mile treck through Marblehead, MA. I hear it is a
great ride.

Love
Diane and Sophia

Thursday, March 13, 2003 8:19 PM CST

Day +1
Platelets = 39
White cells = .1
Crit = 28
ANC = 50
check out Sophias Smile Quilt http://smilequilt.com/sophia.html
Her bone marrow has been wiped, that's what we want. She had a rough day today. She woke several times last night complaining of pain but went right back to sleep, what a trooper. She was put on Dilaudid, a narcotic similar to morphine, for pain. Not a half hour later she began to flip out and continued to do so for 2.5 hours. It was scary to see her like this, she would settle down for about 20 seconds and like a switch it would start again and when it would start up she would get this frightened look in her eyes. I just wanted to hug her and make it go away. She was given 2 doses of a sedative to calm her and that did not work. They finally forund something that would calm her down and she has been asleep ever since. She has to have the pain meds for her mouth sores and sores in her intestinal tract and the only ones that really work are the narcotics. We will have to try several mixes to see what works.

She now has a fever of 103. This is not uncommon when the immune system is wiped out. She has started another antibiotic just in case theres a bug brewing in her. Also cultures on her IV lines to make sure it is not a line infection. She will most likely start IV nutrition tomorrow as she will not be eating too much if at all. She looks so cute sleeping in her "cage" as she calls it. She also looks like she has been in the sun for too long the thiotepa rash is coming out, it does give her a healthy glow.

I had a problem uploading her photos last night, they are there now from her Stem Cell Transplant.

As always thank you for checking in on us,as well as the many prayers.

Good night,
Diane

Wednesday, March 12, 2003 10:01 PM CST

AAAAAAAAHHHHHHHHHHHHHHH
Sigh of relief.
She was in a great mood, until 1:35. Dr G and 2 nurses came into the room with the warming bath for the Stemm Cells, they come from the blood bank frozen. She was so facinated by it, she kept calling it a tubby. Dr g, having an interesting sence of humor kept telling her to climb in and take a bath. She said "nooo I'm too bigga" he also sang Stem Cell songs only he could appreciate. 3 bags of Cells were thawed and hung for her and with each infussion she became very ill, but she took it well. Took it better than her mommy. God, I hate to see her hurt so much, she will never rember it but it will be burnt in my soul for ever. She was very tired after and slept for a while then spent the rest of the day on my lap. She was ill a few more times but is now sleeping. She has alwayswanted her baby in the bed with her at night, not tonight. I think she has only enough snuggle for herself.

We now wait for her Stem Cells to take hold and fill her marrow. Once she starts to produce blood cells on her own she will go home. That day cannot come too soon. Sophia will blood transfussions until she can hold her own (DONATATE BLOOD). She will also have antibiotics, antifungal, and antiviral meds to help keep her healthy. Sophia will soon start TPN (IV nutrician) so she doesn't loose too much weight. They are anticipating bad mouth sores to start soon and she will also be put on Dilaudid, narcotic for pain, this also aggitates her and makes her very itchy so we will see how she does on that. The last SCT we had to back off the pain meds.

What a day, what a week, what a team. The last bag of chemo, the last bag of Stem Cells during her last hospital admission, barring any possible complications(there won't be)she will always sleep in her own bed. Her Big Girl bed.

Hersheys wins it again.

Thank you for all the kind thoughts and prayers and for signing in.

God bless these seeds of life that have been planted, now we watch Sophia's garden grow.

Love Diane
PS see the new SCT photos

Tuesday, March 11, 2003 10:40 PM CST

Day-1
"on the seventh day he rested" And she did. We had an easy day, she is very tired but in good spirits. She had her first red cell transfussion today(thank you Bill M.)and that perked her up a little. She is scheduled for transplant at 1:00 pm, this will be tough because she cannot have anything to eat or drink after midnight. She will have 6 premications to prevent an allergic reaction to the preservitive used to store her cells, one drug is a steroid which will make her extremely aggitated and a sedative to hopefully calm her. ( Jamie, Grodman gave in to the ativan. YEAH)Her first stem cell transplant was really bad and scary. She was having a fit and vomiting and then when the Dr gae her a sedative she was snowed ad HR, Resp, and Blood Oxyg. dropped. We are hopefully not going to have that this time.

She is so comfi right now. Her HR is down to a normal range and she is sound asleep. Rest baby rest tomorow is a big day.

Jamie, Sophia was looking for you today, Jeanie from clinic came in to play and when I told her Jeanie was coming she perked up and smiled and said "Jamie?" You know the way the pitch in her voice goes way up when she asks a question.

I will try to update the site as soon as possible tomorrow.

Good night all
Check out the 3/11 journal for Lina www.caringbridge.org/fl/lina A beautiful reccount of their family's experience.
Carl had his Stem Cell Transplant today. Go trooper.
www.caringbridge.org/mn/carcar

Monday, March 10, 2003 10:48 PM CST

Day-2
We had a fairly good day today. She felt a little junky and tired. She has just finished #11 of 12 doses of Cytoxin and has done well. She had a bit of a yucky tummy when Nurse Jamie did her mouth care but I think that was waiting to happen all day. She is sleeping soundly for the moment, as she always does. She has been holding her own and has not needed blood as I thought, red blood cells are down to 25 from 33. She came into this so healthy, I think that she was in a better position to handle this treatment. Last dose is at 6:30 am and that will be it. She has been having EKGs every day to monitor her heart, as Cytoxin could possibly damage her heart, all normal. What a powerhouse she is, as yucky as she fells she wants to play, tea party, nurse to dolly and begs to be tickled. This kid is gearing up for something important in life. I have been living in awe of her for 7 months, as well as the strength of my Olivia to have mommy suddenly taken away from her so often with out so much as a whimper. I feel, no I know that I have been truly blessed. I have many hard days, as do all of my fellow cancer mommies and I am very angry sometimes but I hope when the dust settles alittle I will have learned to appreciate my little ones more. I have been given the gift of life's experience and it has changed me. I want to share this gift with everyone I know and hopefully it will make just one person appreciate what they have even just a little bit more. We are given many gifts every day in life and some are bigger than others and some we really have to be paying attention to notice and others slap us right in the face. If we can learn to see life in that light I think we would all be better for it.

Ok that is done.
M&Ms again, ooooooo chocolate
I am going to have to start keeping a running tally to see what wins.
Thank you Papa and grammy for supporting me for the Harbor Walk, as well as everyone els who contributed to this cause. I f you want to join us please use the link below and sign up for my team.
Thank you all for looking in on us and for signing the guestbook I try to read them to Sophie but she is only 2 but I enjoy it. Sometimes it can help get through a rough moment.
Look in on Little Carl www.caringbridge.org/mn/carcar
He has his day 0 on 3/11 and it's a big day for him and his family.
Diane
Chocolate is a Vegetable

**
Chocolate is derived from cocoa beans.

Bean = vegetable.
**
Sugar is derived from either sugar cane or sugar BEETS.

**
Both of them are plants, in the vegetable category.
Thus, chocolate is a vegetable.
**

**
To go one step further,
chocolate candy bars also contain milk,
which is dairy.

So candy bars are a health food.

**
Chocolate-covered raisins, cherries,
orange slices and strawberries
all count as fruit,
so eat as many as you want.

**
Remember - - -
"STRESSED"
spelled backward is
"DESSERTS"

Thank you Auntie Harriet and Uncle Louie

Sunday, March 9, 2003 10:09 AM CST

Day-3 and counting
I hate to even say the words but she is doing well. She's still asking for food, she eats a little but I can't believe she still asks. She had 6 doses of Cytoxin and feels a little sluggish but she is doing well. Uneventfull day yesterday and hoping for the same today. She does her mouthcare 4 times a day with little complaint, God bless her, I've let her do it to me and it is yucky. She is feeling junky today and with 6 more doses it will continue to build up in her system, the more she gets the worse whe will feel. Today will be a lap day.

Hersheys for yesterday. Do I love chocolate!

Enjoy your Sunday
Diane

Friday, March 7, 2003 11:11 PM CST

Day-5
Last day of Thiotepa and the first of the Cytoxin. We had a good day. She had Atevan before her EKG and she sailed right through, atevan turns Sophia into a happy drunk(can I have some?) I finally had her favorite doll autoclaved to kill any germs on it so she could have her little patient back, she went right to work changing bandaides and checking temps, bloodpressure changing diaper and putting on the medicine so the baby would not have a sore tuchie. The doll was a Christmas gift from the dad of a special man who lost his life to Cystic Fibrosis in February. You meet so very many special people here and unfortunately some, too many, become memories.

Best of luck to Carl who is in transplant now, one day ahead of Sophie. He has been having fevers and may have an infection in his IV line. www.caringbridge.org/mn/carcar
and for Morgan who left transplant Day +13 as did Sophia her first transplant, way to go Morgan. www.caringbridge.org/nc/morganbarnes

No candy today, Macaroons are the Cookie of the day.

Thank you so much for checking in on us and forward us along to everyone you know. God bless. Diane and Sophia and Family

Friday, March 7, 2003 6:01 AM CST

from yesterday, caring bridge was down last night

Sophia had a great day, considering the amount of chemo she is getting. She is taking big girl showers instead of baths, and loves it. She played with Kerri, one of the Child Life specialists, they had a picnic on the floor and watched movies and read stories. She has a sore backside due one of the side effects from the chemo. A salve used on burn patients helps to soothe the irritation. Dr Sophia changed Mommies bandaide, checked her belly, looked in her mouth and ears, And she checked out ok. Mommy even had her mouth care. Counts are dropping whites are 2.9 from 5.2, reds down to 29 from 33 and platelets down to 129 from 300, chemo is working. She should need blood by Saturday.

I was interviewed by WAAF 107.3 this morning for some fnd raisers and for Red Cross, intereview will be on sometime Sunday. I felt bad with all that was going on I was not able to prepare as well as I wanted, but I think I did OK. We will be preparing to be on Channel 56 later on in the month.

Tomorrow Sophia will finish thiotepa and start cytoxin every 8 hours for 4 days. This is a very toxic drug and very her sick, hoping it does not. It could dammage her heart so she will have an EKG prior to her infussions. We are praying for 6 more uneventfull days to get through to her day 0, Stem Cell infussion.

I think we all should send an email to Bush asking him to put the warships back in the harbor, warplanes back in the hanger, and send the boys and girls back to their families, agreed?

Candy of the day in M&Ms(for mommy not Sophia)

Wednesday, March 5, 2003 9:36 PM CST

Well, Sophia's white counts were more normal so we started Thiotepa today and did fine. She actually enjoyed her bathtime X3. She has started to show changes in her skin in her lips, they so red women pay $25 for lipsticks that color. She was in a goos mood all day, she especially enjoyed a visit from the new Sr resident assigned to her today, Dr Rich. He played with her through the window and she got sooo flirty with him. I said in the beginning to her DR they need male nurses for Sophia she loves men. Her blood evels are fine no need for any transfussions just yet, possibly by friday or saturday. I have added some new photos today don't forget to check them out.
Things to remember:
* donate blood
* Join our Harbor Walk in June
* Sign Sophie's guestbook
* Eat a Hershey Bar
* Refi, the rates are great
* The Cycle for Life is coming up in September, I'll keep you posted on that.
* Pray for Sophia and Carl, who are enduring the same treatment this week.

Thank you and God bless
Diane

Tuesday, March 4, 2003 10:35 PM CST

Sophia has an elevated white count to day, about 5 times what it was on monday. This could be due to contamination from the puntured line, however she is not symptomatic no fever or discomfort in any way,asside from a slightly swollen and sore left arm. It is more likely due to stress from the surgery yesterday. They are not taking any chances, blood cultures were done and IV antibiotics started this morning. Sophia's blood will be checked again in the morning and if white counts are down and cultures don't grow anything and she remains healthy chemo will start as scheduled. Asside from the high white count, we had an uneventfull day.
She is going to receive a drug called thiotepa for 3 days, a drug commonly used n transplants. She will have to be bathed at least 3 times daily as the drug is secreted through the poors and would burn her skin it were not washed off. She will get sunburnlike rash all over her body that, in areas of friction, will peel and become irritated. She also will get Cytoxin 3 times a day for 4 days, this drug she has had before and does fairly well with. As with the last transplant, she will rest with fluids for 24 hours and then have her Stem Cell infussion. She had a tough time with it last time, hopefully we can manager her better with this round. Take care and God bless, especially those not in the place that they should be tonight.
Also thank you Dr. Gilchrist and Dr Lessin for bringing my daghter safely back to me Monday evening. Again God was with you as he was when you performed her tumor resection.
Diane

Monday, March 3, 2003 11:19 PM CST

Hi all,
We were admitted today after leaving the hospital ER this am. Docs were not happy with the reapir job, nor was I. She went into surgery at 2:50 pm to remove to broken IV line in her chest and replace it with a new one, a procedure that should have olny taken 1 hour turned into 3.5 hours. The line in need of replacement was put in place August 2002 at diagnosis, it has done well alittle sluggish but served the purpose. When the surg. went in to remove it(pull it out) it broke because tissue had grown around it and it was stuck and they had to go digging for it. A piece came dislodged and went straight to the heart, they had to go in through the artery in the groin to fish it out. I began to worry when the surgery turned into 3.5 hours, they did come to me and tell me that it was stuck and they would have to spend more time woring it. I neer realized this could happen, or maybe I did and supressed it. She came out of it fine, I think I may have lost 10 years by the time this is all done. She also had her left arm swell and turn purple not too soon after returning to her room, scaring mommy. The reason for the swelling was due to the artery being agrivated form the surgery. Things, they say, happen for a reason, if her line had broken at home that way would it have done the same thing? We were here when it happened and she was pulled through with out a hitch. Thank God. I hae been told on many occasions she has a Gardian Angel, she does. WHAT A DAY!!!!
We are now inpatient a day early. Kim, Sophia did not want Carl to go through this one moment by himself. We are right there with you and they eare holding hand in their dreams.
I found out today that a boy I know, Milton, with Osteosarcoma, pedi bonecancer, passed away on Sunday Morning. I met his mom on many stays here at Floating. He was in his third relapse and went peacefully. He had the same Visiting Nurse Sophia had and I knew he was in and was not doing well. It is very hard to hear these horrible things, these babies go through so much in their little lives. Milton would hae been 15 years old tomorrow. God bless Nedia, Milton's mom, he is free of pain but she is not. Thank you all for checking in sign in if you can.

This was emailed to me today when I was feeling so bad with all that was happening, and selfishly so. Thank you Dotty Martin.
Dear Diane,

I'm glad we were able to help in some small way and hope that our continued prayers and thoughts will be of some small value to you and little Sophia. I do hope that when things settle down and Sophia is feeling better that you
and Stephanie can visit and of course, if you ever find yourself on Claremont Street, you're always welcome to stop in.
I have to tell you that we think that the strength and courage that you display through your web site is truly amazing. You display such dignity and grace in the face of this terrible illness that Sophia has, that we are just in awe. Today I received the following email from a friend of mine,and as soon as I read it, I realized it more appropriately applied to you and Sophia. You two are both truly heroes.

Charles Plumb was a U.S. Navy jet pilot in Vietnam.
After 75 combat missions, his plane was destroyed by a
surface-to-air missile. Plumb ejected and parachuted
into enemy hands. He was captured and spent 6 years in
a communist Vietnamese prison. He survived the ordeal
and now lectures on lessons learned from that
experience!

One day, when Plumb and his wife were sitting in a
restaurant, a man at another table came up and said,
"You're Plumb! You flew jet fighters in Vietnam from
the aircraft carrier Kitty Hawk. You were shot down!"

"How in the world did you know that?" asked Plumb. "I
packed your parachute," the man replied. Plumb gasped
in surprise and gratitude. The man pumped his hand and
said, "I guess it worked !" Plumb assured him, "It
sure did. If your chute hadn't worked, I wouldn't be
here today."

Plumb couldn't sleep that night, thinking about that
man. Plumb says, "I kept wondering what he had looked
like in a Navy uniform: a white hat; a bib in the
back; and bell-bottom trousers. I wonder how many
times I might have seen him and not even said 'Good
morning, how are you?' or anything because, you see, I
was a fighter pilot and he was just a sailor." Plumb
thought of the many hours the sailor had spent at a
long wooden table in the bowels of the ship, carefully
weaving the shrouds and folding the silks of each
chute, holding in his hands each time the fate of
someone he didn't know.

Now, Plumb asks his audience, "Who's packing your
parachute?"

Everyone has someone who provides what they need to
make it through the day. He also points out that he
needed many kinds of parachutes when his plane was
shot down over enemy territory - he needed his
physical parachute, his mental parachute, his
emotional parachute, and his spiritual parachute. He
called on all these supports before reaching safety.

Sometimes in the daily challenges that life gives us,
we miss what is really important.
We may fail to say hello, please, or thank you,
congratulate someone on something wonderful that has
happened to them, give a compliment, or just do
something nice for no reason. As we go through this
week, this month, this year, let us recognize people who pack the parachutes.
I am sending you this as my way of thanking you for
your part in packing (Sophia's) parachute. And I hope you will send it on to those who have helped pack yours and others!
Sometimes, we wonder why friends keep forwarding jokes
to us without writing a word. Maybe this could explain
it: When you are very busy, but still want to keep in
touch, guess what you do --- you forward jokes. And to
let you know that you are still remembered, you are
still important, you are still loved, you are still
cared for, guess what you get? A forwarded joke.
So, next time when you get a joke, don't
think that you've been sent just another forwarded
joke, but that you've been thought of today and your
friend on the other end of your computer wanted to
send you a smile; "just helping you pack your
parachute".
Keep up the good work that you are doing packing Sophia's parachute and know that there are others out there that are ready, willing and able to help you pack yours. Good luck and god bless.
Dottie and Jerry Martin

There are so many who are in need of parachutes. The Hrbor Walk will benefit so many that little ones you have never b4 met. Giving blood is the biggest parachute you could ever pack. The gift of life, think about that.
Thank you
Diane

Monday, March 3, 2003 4:07 AM CST

It's 4:30am and we just walked in the door from the ER. Sophia's central IV line in her chest burst at 7:30 pm and we were off to the ER. A 20 minute repair took over 7 hours. We have to be back in the clinic for antibiotics, because of the hole in the line, at 9:00 am. Mommy is going to be alittle cranky today.
Thank you for checking in.
Diane

Sunday, March 2, 2003 11:21 AM CST

Poor Sophie has to stay home with mommy today while Olivia goes to a birthday party with her daddy for her friend, Julia from Sterling, MA where we used to live. Sophie wanted to get dressed up just like her sister even though she could not go. I was gearing up for the tears and yelling but it never happened. It's amazing how much she understands, I told her because of her cancer-booboo she could not go and she just said OK. When they left she ran to the window and waved byebye and went off to play. I am very lucky to have such wonderful girls. Although she makes up for the crying and yelling at other times(ha ha).
Only 1 more day to prepare. I have to wash all the clothes we bring, hers and mine, and put them in a bin fresh from the dryer. Even if I've already washed it it must be straight from the dryer. The bins must be washed with antibacterial soap as well any other item I bring in the room with me, camera, laptop, etc. If she wants to bring her favorite doll with her, a doll given to her by the father of a TJ Richmond of Plymouth who had cystic fibrosis we met during one of her admissions and is no longer with us, it must be brought to surgery to be autoclaved. I won't bring in any toys because she should only have new toys that are wrapped, same for crayons and markers and paper. The Childlife department will be sure she has things to do. All this is to eliminate or at least limmit the amount of germs and bacteria to come in contact with her. When we arive at the hospital Sophia must have a bath and put clean clothes on, I will have to do the same. Again to try and leave outside germs outside.

Check out the photos and please sign in, remember mommy loves mail.
* check in on us often
* donate blood
* pray for us and the too many other children with this horrible disease
* send this link to everyone you know
Thank you
Diane
PS this is cute. Thank you uncle Mark
The Amish Elevator

An Amish boy and his father were visiting a mall. They were amazed by almost everything they saw, but specially by two shiny, silver walls that could move apart and then slide back together again.
The boy asked, "What is this, Father?"
The father (never having seen an elevator) responded, "Son, I have never seen anything like this in my life. I don't know what it is,"
While the boy and his father were watching with amazement, a fat old lady in a wheel chair rolled up to the moving walls and pressed a button. The walls opened and the lady rolled between them into a small room.
The walls closed and the boy and his father watched the small circular
numbers above the walls light up sequentially. They continued to watch until it reached the last number and then the numbers began to light in the reverse order.
Finally the walls opened up again and a gorgeous, voluptuous 24 year
old blonde woman stepped out.
The father, not taking his eyes off the young woman, said quietly to his
son... "Go get your mother."

Saturday, March 1, 2003 10:31 AM CST

A great day to get out and enjoy and we are about do just that. Nothing going on, thank God for boredom. 2 days left at home!

Things to remember:

* Add a shortcut to your desktop for this page

* Fundraiser on April 25 at Lombardo's in Randolph, MA

* Fundraiser (a long way out) in June on Boston Harbor

* As always donate blood, if you can

* Check up on us on a regular basis

* Send this page to everyone you know

* Plase sign the guestbook, mommy loves mail

* And pray for Sophia

Sophia's friend, Kevin, from the hospital has a new baby sister, Molly Elizabeth, 6lbs 9ozs 02/28/03 10pm.

Please send a thought to Carl a little boy Sophia's age has Stage IV Neuroblastoma and is going in for his Stem cell Transplant on Monday March 3, 2003. He is treated at Memorial Sloan-Kettering in NYC. http://www.caringbridge.org/mn/carcar/
Good Luck Carl, Kelly and family.

Friday, February 28, 2003 8:20 AM CST

Happy Friday.

There is absolutely nothing going on, YAHOO! Yesterday the visiting nurses came to do a check up on Sophie and change her dressings, I think it was the easiest visit they have ever had.

Today we are going out to hang flyers for blood donation at local businesses. I have sent out about 15 packages to large Companies hoping to get some support for the THWACK (Together Helping to Win Against Cancer in Kids) fund raiser in April and the Harbor Walk in June. I hope to send out more when we get settled in Floating next week. If anyone knows of any businesses who might be interested in supporting this cause please email me and I'll get a package right out.

Hoping for an uneventful weekend. I was thinking of going somewhere fun for the kids but I am afraid of getting Sophie sick. After her Stem Cell Transplant I will be more comfortable bringing her out, we don't need anymore delays. We have been very lucky in that she has not had any fever or viruses(everyone knock on wood).

I am getting a little anxious about next week. I have to start washing and packing away all of the things we will bring with us to the hospital. I have been slacking so the laundry,dishes and all the other housework has been piling up. There should be a made service included with every cancer protocol, maybe? I, and a few other moms are working on a floating bar with a one drink minimum just enough to take the edge off. Tuesday is the day, 4 days left. Boy, I could use a ........! You fill in the blank, you name it I could use it.

Yesterday is history
Tomorrow is a mistery
Today is a gift,
That is why they
call it the PRESENT!
Mary, Paerent couns. @NEMC

God bless and enjoy your weekend.
Love,
The Donnarumma Girls

Wednesday, February 26, 2003 9:35 PM CST

We went to clinic today for IVIG(gammglobulin)to help boost her immune system and the Doctor is very pleased with how she is doing. Her Blood counts are almost at what you or I may be at, this means that her bone marrow is doing exactly what it is supposed to be doing. I had a concern about the rapid growth of her cancer when she was first diagnosed, I was concerned that this could mean Sophia was at a greater risk of reoccurance. We were told had we waited much longer to bring her in she would not ahve made it. THANK YOU DR. SCHRIEBER. Actually according to the Doctor the fact that it was so rapidly growing that the chemotherapy worked very well. She went into remission after only 2 rounds of chemo. I do not want to get over zealous, I do realize all the statistics about this disgusting invader of my beautiful girl's perfect body. But I do have to start taking it day by day and stop obsessing. We also discussed the next steps in her treatment; 1 removing one of the perminant IV lines in her chest, 2 radiation to the tumor site in her belly and the tumor site in her eyes. The Drs are not sure it is necessary to do radiation to the eyes but I do. I will be sure to have that added to her treatment plan. We also talked about NYC and if her Doctor was willing to write the letter of medical necessity I needed for Insurance approval of the antibody treatment, they would look into it.?. Oh another thing we go in on Tuesday 3/4 not Monday 3/3, Sorry folks one of the side effects of having a kid with cancer or any illnes is keping dates straight. SO now it is 6 more days. Thank you for all you thoughts and prayers and please keep checking in on us.
Thank you for donating paltelets or red cells or both. And also for checking out My web site for the Harbor Walk in June. This is an event I am looking forward to I think it will be the first family outing as Sophia should be recovered enough to attend. Good night and God bless. PS we are just about at our prediagnosis weight of 30lbs Go Whole Milk!!!

What Cancer Cannot Do

Cancer is so limited................

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

- Source unknown-

Tuesday, February 25, 2003 8:21 PM CST

Today was good. I spent some time explaining to Olivia, the best big sister a girl ever had, that her little sister would be going back into the hospital on Monday. She asked "how many days away is that?" I told her 6 (only 6). she asked "how many will you be there?" I told her alot. She held up 10 fingers and said "this many?" and I said "more" She said "wow" and and asked "how much more?" and I put up all 10 fingers and bent them down and put them up again and bent them down and put them up again. Olivia love asked "how much is that?" and I told her thirty. She said "woah" then asked "am I going back to school while Soph's in the hostibal?" I told her yes. She giggled and said "yippie". I am glad I kept her out of school for this month that we were home, Olivia and her sister bonded very well. It also adds good news with bad news,sister goes away and i get to go to school, yippie. It is hard for them to stay friendly with eachother with Sophia away so much and then when she does come she is very cranky. Olivia tries so hard to be there for her sister.

I also was able to get out for a little while, I was invited to lunch by Maureen Zuzevich, recruter from the Red Cross, and her boss and I had a great burger( I've been dying for a steakhouse Burger). I told them about some of the fund raisers up coming and they are going to participate. The more people they can talk to about the blood shortage the better. For you Amy, I told them to put an Apheresis Center on the Cape so you don't have to drive to Middleboro. You think we'll get it???

I had new flyers made for Sophia's blood campaign. I am going to put them up around town again b4 Sophia goes in on Monday. She will be needing Platelets and red cells later next week, red cells prob. by Friday, platelets Monday or Tuesday the following week.

I want to thank all of you who visited the web page for the Harbor Walk, I hope some of you can register and join us, Sophia and Olivia will be going as well. If there is anyone interested in the THWACK (Together Helping to Win Against Cancer in Kids) Fund raiser on April 25.2003 let me know I can get you some flyers on that, if you know any coorps. looking for tax deductions for next year.

6 more days.

Sunday, February 23, 2003 10:23 PM CST

I have a hard time saying that Sophia is doing so well, it almost scares me. She has 7 more days to BMT #2. She is so happy, laughing and playing her favorite game, hide and seek. Only one visit to clinic this week for IVIG(gammaglobulin). I am spending alot of time checking out other children's web pages, something I did not want to end up doing for just this reason; I am up everynight untill 1 or 2 am reading some horror stories of this piece of *&%$ illness my baby has and some good stories. I am obsessing and I have done very well up until now not to obsess. I need distractions. That is why I've taken the Blood donation on. I have read too many stories of families having to line up donors for thier childrenso when the need arises there is blood available. Immagine how distressing it must be to wait for something that costs absolutely nothing to give. This is a big big hint. I don't care where you are from or if you are worried that the blood is not going directly to her, it is going to a child who needs it. Immagine if Sophia needed blood and someone with her blood type wasn't sure if they wanted to give blood because it wasn't going directly to their loved one. Thank you so much for all your thoughts and prayers. Love to all who take the time. God bless.

Friday, February 21, 2003 8:34 PM CST

We went to clinic today for IV antibiotics as mantenance only to prevent her from getting pneumonia. Her nurse, Maryjo got lots of hugs and kisses from Sophie. When ever we go to the hospital the whole way in she says " go see maryjo's hospital". Easy day. Easy week. Good for our long stay at home. She does not have to be back to clinic until wednesday next week for her IVIG, (gammaglobulin sp??) this is to stimulate her immune system.

I started writing letters to cooperations to help out with a fund raiser for the Hematology/Oncology clinic at Floating Hospital. The dinner/auction is April 25 in Randolph at Lombardos. Lombardos donated their 3 main ballrooms for the cause. The Brewer family from Randolph is hosting the fundraiser, their son has ewings sarcoma (bone cancer) and is in remision. I feel I need to do something to keep me from getting down. Anyone interested please email me or the family directly at JanBrewer13@aol.com.

10 more days to transplant #2 A tiny lttile light at the end of a long tunnell. Thank you all those who have given red cells or platelets in Sophia's name. god bless. Dont forget to sign the guestbook.

Thursday, February 20, 2003 7:22 PM CST

"I asked God to take away my habit.
God said, No.
It is not for me to take away, but for you to givit up. I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary
I asked God to grant me patience.
God said, No.
Patience is a byproduct of tribulations;
it isn't granted, it is learned.
I asked God to give me happiness.
God said, No.
I give you blessings; Happiness is up to you.
I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares
and brings you closer to me.
I asked God to make my spirit grow.
God said, No.
You must grow on your own! ,
but I will prune you to make you fruitful.
I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.
I ask God to help me LOVE others, as much as He loves me.
God said...Ahhhh, finally you have the idea."
THIS DAY IS YOURS DON'T THROW IT AWAY
May God Bless You,
"To the world you might be one person, but to one
person you just might be the world"
NOW PLEASE GO OUT AND DONATE PLATELETS AND OR RED CELLS IF YOU CAN!!!!!!!!!!! ps Another great day!! Thank god for this warm weather. If I couldn't get out of the house soon I think I may have jumped out a window.

Wednesday, February 19, 2003 8:17 PM CST

What a great day!! 40* and 2 feet of snow, the girls had a great time. We went for a walk and the sisters walked hand in hand, mommy with no camera. We will be home for 10 more days before BMT #2, and I am not scared. That's not to say the day we go in I will not be scared, but for now I am OK. I would like to thank all of those who gave blood for Sophia, I recently read on another neuroblastoma web sight that a child had to wait for a platelet transfussionbecause there just wasn't any to be found. It is very important to the survival of these little cancer patients to have these blood products available when needed. If anyone would like to donate red blood cells or platelets please call Maureen zuzevich at the american red cross, 617-312-8284. thank you and pray for us. Also check out newest photos.

Tuesday, February 18, 2003 9:56 PM CST

Sophia was diagnosed with Stage IV Neuroblastoma on August 8th 2002. She has completed 5 rounds of intence chemotherapy, stem cell harvest after round 3, surgery to remove a tumor on her adrenal gland and the first of 2 autologus bone marrow transplants. The second BMT is scheduled for March 3rd 2003. She is doing very well and has since the beginning. she had a rough start getting used to the hospital life but she is now used to it and even has her favorite nurses. She is a very strong girl,very strong. We just started the web page because I realized that I may be able to help others in a similar situation. I was always too scared to talk with anyone going through this because of some of the bad things that can happen and I never wanted to look at any of the websites because sometimes things were written there were too real for me. I am in a different place now and my daughter is doing well. If anyone should need any to ask any questions please feel free to email us.

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