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May 29,
    Hi all, I know it has been a while since we have written. But things took a hard curve ball here and we had no energy to write. Laura is presently in the intensive care unit-because for right now she requires a lot of medical and nursing attention. As many of you know, her counts are taking a long time to come back to fight infection. In addition, she has had blood transfusion and platelets. Now, she is about to have a white blood cell transfusion-something new for us! It is not a common thing done here but it has been around for a while...
Laura has another positive blood culture infection with no cells to fight infection. On top of that, she ended up with third degree burns that ended up in severe blisters that broke and ended up infected.
The pain is intense, however she is being carefully watched by many departments besides oncology -- for example some are the following -
GI surgery, gen. surgery, infectious disease, gyn., wound care, radiology.
Last night was pretty bad but this afternoon she suddenly made a good turn! Soon we will be back in our regular room. She has been here at CCMC just about a month! We miss Joelle so much.....
I know many of you want to visit Laura, but until her counts are up, please wait to visit. You may feel good but do not know if you are fighting something. This applies to runny noses as well from allergies! Plus, Laura's energy is fragile now and really does not want the energy pull of visitors. Soon things will change, and thank you for caring!
She needs to hold all her energy to getting better and heal.
Well, the WBC are here, so I want to sign off and keep an eye in case she gets a reaction.
Please keep the cards coming to the hospital-it lifts her spirits! And remember to post messages to Laura and Joelle.
Most of all pray for her healing.
Love,
Mom



May 23,
     Hello all! Thank you all for the prayers for Laura and good wishes for her recovery. Right now, she is quite uncomfortable with many sores in her mouth and throat from the chemo. She had another platelet transfusion yesterday. Her stomach pains are better and many of the other pains as well. She still has a 0 ANC. with reoccurring fever.
At this time Laura does not have the energy for visitors -
but I will let you know when she will. She does enjoy receiving mail at the hospital. The address here is:
Connecticut Children's Medical Center,
282 Washington Street,
Hartford, CT 06106 -room826.
If you send it home she will eventually get it, but I am not at the home regularly to pick it up.......thanks....
Today she will have a double lumen hickman put is for her medication. Her old port was removed a couple of days ago ... wish the ANC would go up and the fever gone...
Take care
Mom


May 20,
    Good day to every one, hope all is doing well. I am starting to surface and reading everything I can on Laura's treatment -- she had a better night last night. The stomach is still hurting -- so her food is by IV to give the system a rest. Her port change on the OR is supposed to be tomorrow now, but due to a recent infection, we will find out if she still qualifies tomorrow.......that is this life now!!!
My motto-plan by the minute!
Her ANC count is o and platelets are low, so she will need another platelet transfusion.....
Yesterday, Joelle came back from NJ where she was presented by Ed Ryan, head of The Olympic Committee a gold medal which was written best SIS on it!
She was made to feel so happy and special at the Chiropractic Sports Physician symposium sponsored by the NJ Chiropractic Association.
Thank you to Uncle Phil and the NJ Chiropractic association with the Council of Chiropractic Sports Physician and New York Chiropractic Association.
  This evening, St. Anne's church is doing a living  Rosary with the intention for Laura. If you want to go I believe it will start around 7 or 7:30 PM. Prayer is so important for us. I have seen focused prayer work on Laura so many times.....
Love,
Mom



May 18,
   Hello everyone, thank you for all the support you have given us in many different ways.......For those who have not been part of pediatric oncology it is often a roller coaster depending in the type of cancer and the treatment. While there are complications that can be severe at time, the chemo has decreased the pain.  Laura this week was allowed to come home for a few hours on Wed. and Fri. Her counts were dropping Wed. so they said no company as we were leaving and to be prepared for a transfusion when we return. Laura was SO happy to be home then. By Fridays her counts were down to 90 and she was very weak-but she wanted to be home for a few hours. Well, we had to cut it short and come back to the hospital because she was feeling very weak and in pain. On the way back while driving, she passed out on me. I got her back awake and decided not to do the high way in case of a problem or traffic-well I made an incorrect correct turn heading the wrong way  from where I wanted to go while frantically talking on the phone to Laura's nurse. Suddenly, there was a Farmington Rescue car by a house-so I quickly pulled over and ran to them to arrange for an escort or ambulance. An angel had to guide us! They were wonderful, and in no time she was getting hooked up to the monitors and they called for the ambulance.
Her counts are lower and she had a platelet transfusion with a fever. She has an infection with an ANC of only 10. So please, at this time, do not visit her until her counts are up and you call first to see if it is OK. When she is home again and feeling stronger it will be great for her to have quiet company sit with her and talk or watch a video or play a board game etc.
Please pray for her.
Love,
Mom


May 14,
Hi All, I know that many of you are looking for an update from Laura-but right now, she is very low energy and with temporary blurred vision as a result of one of the meds. At this point she is on her 6th day of hard chemo and is feeling the severe fatigue, nausea and vomiting, bladder irritation, stomach cramping, fear. She sleeps most of the time. Her counts are slowly dropping which is norm so please do not expose us to any illnesses. This morning however, she started off quite good-she showered and went downstairs for breakfast. Shortly after that she was being given treatments, bandage changes, examinations and then back to sleep. As she slept, I watched her like when she was my new born baby breathing. As many parents, I love my babies so much! And, they will be 50 yrs. old and I around 90 and they will always be my babies-only, a little taller than I am!
Some times during these moments Laura and I have our most affectionate time talking about how much we love each other. The same feelings are about and for Joelle. Laura is always concerned about her sister.
Today, I was able to arrange for a pass for Laura to
go home for a few hours on Wed. if she is up to it!
This will be good. BUT - for the GREAT news we have an answer on Joelle's blood test. She is a PERFECT match!!!!!! The odds were not good for this-1 in 4.
We are so excited because now we know that we have to get her in remission again and no infection anywhere and pass some scans, etc., and off to Boston's Dana Farber for bone marrow transplant from Joelle. When I called Joelle to tell her that she was a 100% match she was so excited and realized the important role she has in this. I am so proud of them...
She will be another "hero" for transplants! When you see Joelle, remind her of how great a sister she is!
A few hours earlier, one of the docs was saying that if Joelle is not a donor, they would scan the national directory for someone and if not there, go to the European lists because of our nationality backgrounds.
This could take months to locate and arrange for the person to go to Boston. And by late afternoon, Laura's doc came in with the nurses showing us the test results and took our pictures smiling big smiles.

Now, for all of those who were going to go on a list for Laura, please do it for someone else. A few years ago I registered for a drive for a girl in Canton never thinking that my child would need it, and here we are! Give someone the chance of making it-consider donating bone marrow if you are able to.
Tonight I sleep with a warmth in my heart.


May 9,
   Hello all from CCMC - Laura is being pain managed -at times she is quite good and then suddenly it hits hard....She is going to start a hard chemo to get her ready for Boston's Dana Farber.
Needless to say, my heart hurts as does her family and friends. The staff say to me and Laura that she has the right attitude and will be a long term survivor! So please, send her notes with positive thoughts that are up beat for a 14 year old. Joelle slept here for 2 days -they put 2 beds together....we needed this......It would be great if she matched Laura -but that is a 1 in 4 chance...... so time will tell. Thank you all for all that you have done....
Love
mom


May 6,
    Hi All, Laura had a special event today. Since she could not go to the Confirmation ceremony today, we were honored by having the Bishop come here and confirm her! She looked so beautiful sitting in her Confirmation robe in a chair. Jolie, her sponsor looked beautiful and proud as well!  She had about 20 people show up at the hospital to witness this! Joelle was great today, she watched guard for Laura when she had to rest. I miss her so much.......and am
SO proud of her.


May 3,
    Hi all-We are still at CCMC. Joelle has been with the Buenome family and now the O'Connor family. Laura has had quite a severe time with pain. Needless to say,
I am worried.....At 7 AM she will have a scope done in the OR. So far they are thinking the esophagus has something brewing -- hopefully, only infection.
Mom


May 3
Laura was taken by ambulance Tuesday night from Bradley airport to Connecticut Children's Hospital ER. She has been in constant pain with episodes of extreme pain. They are trying to pain manage her and find out what and where the pain is from. This morning early, a scope of the GI will be done. Presently they are thinking it is a problem in the  esophagus. All prayers are welcomed.
If it is not a major problem, her hip replacements have been moved up to May 14 at Waterbury Hospital -due to that pain. You can keep updated by Laura's web at WWW. Laurasurvivaljourney.com    
Joanne


May 1,
Hello all! Hope all is well!
We had a great time on our vacation. The water was beautiful. My brother Jim, sent us to rest at Turkes and Caicos. The water was crystal clear and beautiful.
Joelle took breaks from us and participated at the activities for her age. Laura slept a lot and enjoyed the water and sunshine as did I! Then on the second flight home she had severe pain and had to be taken out from the plane by the paramedics and brought to the ER at CCMC. What a hard time for the three of us.... So, they are controlling her pain and checking to find out what is the problem.
On the up side, Laura will be having bilateral hip replacements May 14 at Waterbury Hospital! This will be better than her waiting until the end of June. All the pains are "wearing " her out. Please pray for the pain to be lifted and the hip replacement goes easy.
God Bless,
Mom

 


April 21, 2002
   Hi All -can you imagine? Snow, heat wave, earth quake and snow coming again!!!!! Not sure what clothes to keep out!
We are doing ok -we went to the ER the other night to get Laura some break thru pain relief. It gave her a break.....Joelle went too. We got home about 2AM!
Joelle was a good help that night.
Well, have to go - Laura needs me. Will write more another time!
Mom


April 13, 2002
      Hi all! Spring has sprung and the flowers are budding - hope it stays......
We are doing well- and look forward to the vacation that my brother "Uncle Jimmy" gave us as a present to the beach - we cannot wait and the warm weather will be so good for her and Joelle and me! Last week was a year since she was diagnosed-hard to believe and yet it feels like it has been our life time.
As for Laura, we just found out that the surgery core compression did not work and that the second hip did collapse which explains why the pain is so bad.
Of course, we always fear that it is the cancer being active-so, so far so positives for that being the reason -- just side effects of the treatment. So we are looking at a double hip replacement and the problems are that it cannot be cemented because she is young and will need replacements down the road.
Also, which type is important because she is immunosuppressed for an implant and some of the chemos affect bone healing...... Monday she has chemo and exam at the clinic with an MRI of the spine on Tuesday. I will feel better when those reports are in. If things are OK this will be done in June and July.
On the upbeat, Craig gave Laura her CD of "There you'll Be". She sounds so pretty on it. If you want to hear it let me know!!! We were so happy -Thank you Craig and your fellow musicians for giving her this experience!!!!!!!
As for Laura's school work-we just received her 3rd quarter report. So far she has 2 A's one A+ but 4 incomplete which is almost done! And her last 1st semester grades were 2 B+, 3 A-,1 A,1 A+!
This semester Laura has a cooking class-we are definitely benefiting on this! She is doing foods from different countries.
As for Joelle-it is now the ending of Pine Grove activities starting up now.
I cannot believe it is almost here. It was yesterday when Laura was doing this.
Soccer is starting up again-last year we could not do any thing. This will be good for her! Joelle is also doing well in school and taking her report on an artist very serious. I am proud of her too.
As for me, Yep I am tired and nervous at times. At times I wish I was that little girl with my parents to help make decisions-but that is what happens when you grow up. So kids-do not rush it! My brothers gift will be good to get us ready for Laura's next procedure.
Take care all and remember April 15th is here. Did you file your taxes?????
Love,
Mom


April 1,
APRIL FOOLS everyone! Watch for the tricks! For those who celebrated Passover or Easter, I hope that you all had peaceful ones.
Last Easter we were in the newness of the diagnosis for Laura with all of its complications. How grateful that I stood by her in church yesterday thanking God that my daughter is with me. Joelle was singing and praising the Lord from the choir loft. They did a great job!
This year has brought new friends to us-people from the hospital and from our community. We as a family thank all who have been there with us!
Old dear friends and new ones-even old friends that have moved or I lost contact with, have come back into our life! We are almost half way there! With no delays she will have a little more than a year to go of chemo-but who is counting!!!!!!! As for her hips-something will have to be done about them -- they give a lot of pain. Anyone who is good at computer searching for pediatric hip replacement information and has the time, please let me know what you find! I have plenty on adult-but very little on children.
Well, I have to figure out how to trick Joelle into getting up for school!
Have a fun day!
Love,
Mom

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