Updates Archive

Date: Monday February 02, 2004

Gia has been enjoying her break from chemo! The home health care nurse drew blood this morning and Gia's counts are good enough to start round three tomorrow. We will start running IV fluids at home this evening in preparation. Hopefully the home labs and the home IV fluids save us some hospital waiting time. Round three is identical to rounds one and two (Cisplatin on day 1; 5-FU on day 3; VCR on days 3, 10 and 17). If all goes as planned, Gia should be home on Thursday.

Date: Tuesday February 03, 2004

Surprise! We are home! Gia put it best when she said it was "one big OOPS of a day!" After making counts yesterday, the oncology team decided to retest the numbers again. After more than 12 hours of IV fluids, the ANC was lower. Hmmm? Is it possible that the IV fluids lower ANC? They don't think so, but we are starting to wonder as this has now happened twice with no other obvious explanation. After spending five hours in the oncology clinic for no reason, we are exhausted! Maybe because we had an equally draining and unnecessary experience last Monday. Gia got a neupogen shot today and will be given another tomorrow. Home labs will be done (again!) on Thursday. If Thursday's home counts are OK, We will try chemo on Friday! On a positive note, Gia is now home and having fun!

Date: Friday February 06, 2004

Ding Ding -- Round 3 --The third attempt was the charm. Finally at 11:00PM chemo began! Gia is in great spirits and enjoying her games and movies. Mom and Dad on the other hand are growing tired of waiting until late at night to begin chemo. This will be addressed tomorrow, and we are confident that they will finally comprehend what are expectations are. I will say, for the most part, we love duPont (especially compared to our other hospital). Our only issue has been Oncology not fully understanding or meeting our needs. One difference with duPont is that we spoke with the Nursing Supervisor, and she fully understood and supported us. She will address the issues with the administration, and make sure they do not occur in the future. She was even kind enough to provide us her pager number if we have issues in the future. Tomorrow, we will also address these issues with the head of the Oncology Team. Future rounds should be much smoother.

Date: Sunday February 08, 2004

Wow, the quickest stay yet! We are home, and it is still light out! We figure they were either sick of us, or they began to understand our fear of germs. We actually feel that the chief of Oncology, as well as the nursing supervisor we have been working with, are understanding our thoughts and concerns. It is a pleasure to be working with individuals who truly want to improve the patient experience. Gia did well in the hospital, in fact she used the potty over 20 times. I guess we'll have to go and pick up a surprise (the latest Dora DVD). Gia is excited to be home. She is currently playing with her Strawberry Shortcake house.

Date: Friday February 13, 2004

We have been meaning to write for a few days, but we've been busy with Gia and things around the house. Life is somewhat returning to normal. We are back to our decorating ways. This was started by our renewed interest in Trading Spacing (similar to Changing Rooms in the UK). We submitted an application awhile back to be on the show, and believe it or not, they called. We had to submit more information, but we have not heard back. Oh well, at least we are watching the show again, and getting decorating ideas. Today we are redecorating some poles in our living room and dining room. Next we will tackle the master bedroom and Gia's big girl room. Eventually we will make our way to the basement.

Enough about us! We received a wonderful present from our friends at Smith and Nephew. They sent us a wonderful assortment of bandages for Mr. Wiggles. We were amazed by the quantity. We just love their products! Gia also received her first present from Chemo Angel Terri!  She just loved all the surprises!  Click here to learn more about Chemo Angels.  Gia has also been receiving valentines gifts from everywhere. It is just amazing to us all the friends she has. Thank you to all.

Good News. We received a recent AFP number. It is now down to 648. Thank you Captain Chemo. For all the grief we have been giving to our Oncology Team, they are doing quite well.  We also received an e-mail from Gia's pulmonologist with her sputum culture results -- No staph, No pseudomonas!  Gia is still doing well, not as active as she was the prior 2 weeks (without chemo), but she is doing pretty well. There is a Dora marathon today, so we will be busy for the next 4 hours.

Date: Monday February 16, 2004

Today we had a really good day. This morning Gia received Vincristin. One of the best parts of the day was working with the Oncology nurse practitioner. She was very open to help us alleviate much of the germ exposure in the hospital. When possible we will do labs at home before coming in to the clinic. We will also do this before hospital stays. This should alleviate many of our exposure issues. She also has taken full responsibility of communicating with the various individuals assisting with our care to ensure that all plans are followed properly. Edie was a pleasure to deal with.

Gia also received another large package from our friends at Smith & Nephew. This company has provided a number of the items we have used through the years for Gia's care. Because we liked the items so much we sent them a "thank you" e-mail. After they received the e-mail, it was forwarded throughout the company. Since then we met via e-mail many of the wonderful people that work there. It is great to see the dedication and care they provide to those in need.

Date: Monday February 23, 2004

What a long day! First we had to drop the one car off because the service light was on. Then we drove to our 8:30 appointment. Unfortunately there was a bad accident on the turnpike which delayed our ride for 1 hour. While we were in the traffic jam the dealer called to say that we forgot to leave a key to the car! We finally arrived at duPont at 9:20. They were very quick at getting the labs pulled and having Gia evaluated. She then received her Vincristin by 11:00. The quickest appointment yet!! For the most part she was in good spirits for the entire day. Since her counts were so good, we took Gia to get fitted for a new pair of shoes. Big Oops!!! Her feet were 2 sizes bigger than the shoes she was wore all day. No wonder she only wanted to wear her boots. She picked out 3 pair that she just loved. Now we hope everyone can get some rest!

Date: Monday March 01, 2004

Gia made counts, so Round 4 is scheduled to begin tomorrow. We are hopeful that this stay will go as smooth, if not even smother than the stay at the start of Round 3. We started IV fluids this evening in preparation for chemo (Cisplatin) tomorrow. Gia also packed the games and videos that she wants to bring with her. She was funny about what she was willing to bring. In prior rounds she wanted to bring everything, including the kitchen sink. This time she was very selective and limit the toys to 3, videos to 8, and the books to 2. Gia is in good spirits and she is looking forward to this being over!

Date: Tuesday March 02, 2004

Wow, what a day! We arrived at the hospital at 2:00PM, iv fluids were waiting for us, and the chemo was delivered at 4:30PM. This is 6 1/2 hours earlier than the best timeframe during prior rounds! Thank you to our team at duPont for listening to our needs! This should help limit the stay and reduce the inconvience to Gia during the course of the evening. We didn't think it was possible, but they really came through! By the way, Ding Ding! Round 4 has begun. Gia is in good spirits, and playing with her Leapster!

Date: Wednesday March 03, 2004

Gia is still doing well, although the chemo has made her a bit nauseous. She also may need a transfusion tomorrow (by the way, if you have the opportunity, please give blood, the life you save may be Gia’s). Beyond all this, she is still enjoying her videos and her Leapster. It is amazing to see how well she handles things. We also have the latest AFP number! AFP is not down to 165, well on our way to our goal of 0. On my ride home I thought about these updates, and I realized that they might not clearly represent the full relationship we have with A.I. duPont Hospital for Children. Click here to read the story about our relationship with A.I. duPont Hospital for Children

Date: Thursday March 04, 2004

We are home at last!! Although we hoped to be home sooner, the time service during this round was still the 2nd best time out of the 4 rounds. We appreciate all the hard work and accommodations made by the team at duPont. This certainly goes a long way in maintaining clear and healthy lungs!   We just hope that we can get past the pharmacological difference of opinion regarding the administration of day 3 chemo.  Some doctors are willing to administer the chemo 35 hours after the day 1 chemo, while other hold firm on 48 hours (although they gave us a break and did it at precisely 44 hours).  The difference in time could have had us out of the hospital in the early AM, instead of 1:00PM.  But hey, 1:00PM is much better than 5:00PM or later, so we are not complaining.

Date: Thursday March 11, 2004

Gia received her Vincristin today. We were very pleased with how efficient the appointment was.  We received an interesting letter in the mail today.  It was a survey from duPont regarding the care Gia has received.  We are looking forward to filling it out.  We are pleased that duPont is so open to feedback.  After all the time we spent at CHOP we were never asked for feedback, and when we offered some we were told what a great hospital it was, and the feedback was not necessary. 

In other news, the MRI is scheduled for Monday, March 22.  This will determine our future course.  Based on the results we may continue chemo, have a surgery to resect the tumor, or seek a liver transplant.  Our goal is resecting the tumor, because the thought of a 3 year old CF'er with immuno-suppressants drugs is very nerve-racking for us.  Of course we will do whatever option we feel is in her best long term interest, and if that is a transplant, than that is what we will do.  We appreciate all the prayers and support from our family, friends, and all the other individuals who have learned about Gia's story

Date: Tuesday March 16, 2004

Gia received a blood transfusion and platelet transfusion today. She was in the clinic from 11:00 this morning until 6:00 this evening. This means she is full of energy and looking forward to a great night of keeping Mom and Dad up while she plays. We just changed the tape on Mr. Wiggles and gave her the shot of GCSF. We gave her a couple surprises because she was such a good girl throughout the day! Next up is Vincristin on Thursday! The MRI is scheduled for Monday. No matter your religious affiliation, we would ask that everyone keep Gia in their thoughts and prayers on Monday. Hopefully the tumor will be resectable!

Date: Thursday March 18, 2004

Gia went to the clinic for a bit of Captain Chemo this afternoon. This shot of VCR is the last piece of Gia's fourth round of chemo. It is always a pleasure to visit Hotel duPont! If all goes as planned we will visit ScanLand (Radiology) on Monday for an MRI! AFP is at 145. Please hope and pray that the tumor is resectable this time!

Date: Monday March 22, 2004

Well, it seems that we had a very productive day in ScanLand today. The pre-op staff did an EXCELLENT job of reducing Gia's exposure to germs. We were taken right back to a private examining room and had no exposure to other patients. The radiology staff also exceeded our service expectations by noticing that Gia had an MRI scheduled today and a CT scan scheduled on Wednesday and were prepared to do both tests today. This was a pleasant surprise as we were told that this was not possible. Our anesthesiologist used and LMA (laryngeal mask airway) instead of an ET tube, so Gia does not have a sore throat or stridor. Gia is feeling very well and eating normally. We are praying that the tumor is resectable while we wait to hear from our surgeon and oncology. Thank you to our friends and family for all of your thoughts and prayers.

Date: Tuesday March 23, 2004

Resectable, maybe!!!!!! PLEASE keep the prayers coming! The surgeons are still reviewing the MRI results, but we should know more tomorrow. Unfortunately, the CT scan was NOT done yesterday so we will be visiting ScanLand tomorrow morning for a CT scan. Gia is doing very well and showing no effect from the MRI done yesterday.

Date: Wednesday March 24, 2004

Not Resectable! Although we hoped for an alternative solution, it appears the tumors are not resectable. Because of this, we will have to consider other options, including transplantation.

Date: Friday March 26, 2004

Gia is still doing well. She is busy playing with her toys, and learning new computer games! We actually had to buy a new computer after the screen broke due to all the usage!! Next week promises to be an interesting week. We scheduled consultations with surgery and oncology at Hopkins Children's Hospital in Baltimore. We also will be meeting with the oncology and transplant teams at duPont. We just love family meetings!!

Date: Monday May 03, 2004
 

This afternoon we all visited the clinic for Gia's VCR; this is the last piece of round 5. Unfortunately, this was the longest VCR appointment ever. UGH!!!!! Gia's counts are still low, but (luckily!) she did not need a transfusion. This evening Gia will start taking Ativan to get her sleep schedule back to normal. We decided to pay for the new perscription out of pocket and deal with the insurance comapny snafu on the back end as we could all benefit from sleep NOW!

Date: Sunday May 16, 2004

Today, the Vatican officially declared Gianna Beretta Molla a Saint! Now Saint Gianna was a true inspiration in our lives, but we still have a need to request more. This woman, a doctor, had a very similar pregnancy as Carolyn's with Gia. As Carolyn did, she chose the life of the child over her own. We continue to call on Saint Gianna to look after Gianna Rose, as well as all children afflicted with life shortening illnesses such as Cystic Fibrosis and Cancer. Gia has always referred to her picture as "Gia's Doctor," well we hope that she is able to assist us in our time of need.

Before anyone asks, we have not heard any additional news from Johns Hopkins. We are praying and waiting!

We also want to thank all those that made the Great Strides Walk to benefit the CF Foundation at Peace Valley Park. Although we did not have the time or the energy to focus on the fundraiser, many of our family and friends helped the walk site achieve over $38,000 in donations! Thank you for all the support!

Date: Thursday May 27, 2004

First we would like to thank everyone for all the prayers and support! Gia has been doing great! She is very active and happy to be home. We appreciate all the hard work of the medical professionals we are consulting regarding the appropriate treatment options to remove the cancer from the liver. It is always difficult to ensure the decisions we make are the best for Gia’s long term health. We thank these professionals for listening to our concerns, providing us informative feedback, and considering the best options, including unique alternatives. We have not provided an update to allow all the medical professionals the time necessary to formulate the best plans for moving forward. We hope to provide more information in the future, so please check back..

Date: Friday June 11, 2004

All is well; Gia is busy practicing ballet steps! We spent most of yesterday at CHOP for an audiology exam and a glomerular filtration rate (GFR) test to evaluate kidney function. Today we returned for a CT scan. Gia was extremely uncooperative about drinking the dye and opted for an NG tube for the second dose! Luckily she remained still for the scan and did not require sedation. Perhaps she was so cranky because the PDA broke during her game of Jawbreaker early this morning! We are hoping that HP will cover this under warranty. The PDA is a necessity as it keeps all of us busy in the hospital! The plan now is to meet with CHOP oncology Monday morning and start a sixth round of chemo. Gia is scheduled for an echo and EKG on Monday morning to make sure that she can tolerate this new course of chemo.

Date: Monday June 14, 2004

Ding Ding! Round 6 has begun. New chemo drugs and a new hospital; none of us are resistant to change! Lots of new faces and some familiar ones too. So far, so good with our return to Children's Hospital of Philadelphia. Gia had a echocardiogram and an EKG in the AM. Adriamycin and Cyclophosphamide were run in the clinic and we arrived on the floor around 5:00. The CHOP oncology team helped us reduce germ exposure by allowing us to wait in a treatment room throughout the day. The best part about the "new" drug combo is Gia will not be woken throughout the night to use the toilet. The plan for now is liver biopsies for Frank and Gia tomorrow or Wednesday and Gia will be home on Wednesday or Thursday (Tuesday if they are unable to complete the biopsy).

Date: Monday June 21, 2004

Gia is still doing well! Jenine, on of our favorite nurses, came this morning to draw blood to check counts. We are still awaiting final word on the possibility of resection. We did hear that the good portion of her liver is better than expected. Now we just need the word from the surgeons. The only bad part of the day was when HP called to say that it would cost $170 to repair the PDA. The screen broke while Gia was playing a game. They feel it is not a warranty repair. hmmm!

Date: Thursday July 08, 2004

Gia is still doing very well! We apologize for not offering many updates recently, but we were awaiting specific news. Well we are pleased to announce that our health plan has decided to fully cover us if we go to Johns Hopkins. Based on our prior experience at CHOP, we feel it is the best decision for everyone. The plan is a consultation on July 16, with a surgical date shortly after that. The resection surgery will be a very difficult one, but after meeting with Dr. Columbani, as well as follow up research (and seeing him on Discovery Health - Hopkins 24/7, we are confident in his abilities. We will post more information in the next few weeks! Thank you for keeping Gia in your prayers.

Date: Thursday July 08, 2004

Gia is still doing very well! We apologize for not offering many updates recently, but we were awaiting specific news. Well we are pleased to announce that we have decided that we will be handling the surgical portion of Gia's case at Johns Hopkins. We firmly believe that this is the best option for Gia at this time. The plan is a consultation on July 16, with a surgical date shortly after that. The resection surgery will be a very difficult one, but after meeting with Dr. Colombani, as well as follow up research (and seeing him on Discovery Health - Hopkins 24/7), we are confident in his abilities. We will post more information in the next few weeks! Thank you for keeping Gia in your prayers.

Date: Friday July 16, 2004

What a day in Baltimore! The day started with a meeting with world-renowned Pulmonologist, Dr. Beryl Rosenstein. Since we have always referenced his book about CF (written for doctors), we enjoyed the opportunity to meet with him. He asked many questions that we have been asking for years. He provided insight into how he would manage Gia's case, and he provided her, pending culture results, a clean bill of health for CF! He did not see any CF issues in preparation for a surgery. We then met with our surgeon, Dr. Paul Colombani. He too is a world-renowned doctor. He provided us with his plan. He placed Gia as a "status 1" on the liver transplant list. This means that she will be one of the first to be offered a liver. When a liver becomes available, we will receive "the call." We will immediately take the 2 1/2 hour ride to Johns Hopkins for surgery. During the surgery, Dr. Colombani will attempt, if possible, a resection. If the resection is successful, the liver that was going to be transplanted into Gia will be given to another family awaiting this life saving treatment. We have full faith in Dr. Colombani that the best decision will be made during the surgical procedure! After a number of blood tests, we spent the day at the Inner Harbor, and the National Aquarium in Baltimore. We had a terrific time! At this point we would ask that everyone pray that a liver becomes available soon, and that when the surgery happens, that the tumor will be resectable. We would also ask everyone to sign up to become an organ donor. This is not only updating the information on your license, but also discussing this with your next of kin. The life you save could be Gia's! discussing this with your next of kin. The life you save could be Gia's!

Date: Tuesday July 20, 2004

Still waiting! There were a few insurance coverage issues delaying the listing, but at this point they have been rectified and Gia is now listed! Carolyn's worst fears have been realized. She now owns a minivan! In preparation for upcoming travels, we decided to purchase a minivan. Gia loves it because it is blue and it has a built in DVD player. She especially loves the headphones that allow her to listen to the DVD in private! This is extra special for mom and dad, who can only take watching and listening to certain shows one time.

Date: Sunday July 25, 2004

We got the call at 2:00 AM!! We are on our way to Hopkins, with surgery scheduled in the morning. Please pray that Dr. Colombani will be able to resect the tumor! We would also like to thank the wonderful family that chose to donate the liver. It is there love, that makes this possible. We will update this site late in the afternoon with a new update.

Date: Monday July 26, 2004

Unfortunately the tumor was not resectable so the surgeons are going ahead with the transplant. We would like to thank the donor of the liver as well as everybody for their prayers and support. We will update the site once the surgery has been completed.

Date: Monday July 26, 2004

We are heartbroken to report that Gia passed away this evening at the tail end of the transplant surgery. We are grateful for your prayers and support. Love, Hugs, and Prayer to All -- Frank and Carolyn Eliason