Date: Friday January 02, 2004
Gia visited the oncology clinic to start shots of neupogen or GCSF today. These shots cannot be given through the central line and are given in her legs. Although some of her numbers are coming back up, Gia's ANC is currently O. This means that she is highly susceptible to bacterial infections and the shots are needed to help out. Now that we know how to give the shots, the home health care company will send over the supplies and we will be able to give the next nine (one per day) at home. The next round of chemo is scheduled to start on Monday, so Gia will be in the hospital. Last night we explained to Gia what the chemo was doing, and how it is fighting to cure the cancer. She then asked if it would cure the CF too?
Date:
Monday January 05, 2004
Ding! Ding! Round 2 began today! Gia's counts all turned better today, so the shots of GCSF have been DC'd (at least until later in this new round). Gia went in for her 10:00 labs to check her counts. They came back around noon. We then waited (and waited and waited) for a room to be made available. While we were waiting they began to hydrate her with IV fluids. Finally around 5:15PM we went to our room. Gia got settled in, and immediately requested that her DVD player be set up. She will continue to get fluids until she is hydrated enough to begin the 4 hour session of chemo. Last time they began the Cisplatin at about 11:00PM. This will be followed by more fluids. She will receive her other chemo meds on Wednesday. Hopefully she will also come home at that time! The best part of the day was when we found out that we were assigned the same nurse that helped during round 1.
Date: Tuesday January 06, 2004
Gia received her chemo at about 1:00AM last night. Today she played with her toys and watched many of her DVD's. She was a bit sleepy so she took a few naps. Mom is a bit tired, but she is doing well. Dad, well I'm just going crazy because I am unable to be there through every moment. Because chemo was started so late last night, Gia may have to remain in the hospital until Thursday. Unless, of course, we drive them crazy enough to be let out on Wednesday. Trust me we are trying!!!!
Date: Thursday January 08, 2004
alpha feto-protein (AFP) is often a predictor for hepatoblastoma.
The goal is to have a number below 8 (we still have a long way to go).
The recent decline indicates that the chemotherapy is helping.
Home at last!! Gia handled the chemo well. VCR and 5-FU were given at 1:30AM. Gia slept until 11 AM and we (finally!) left for home around noon. We are hoping that the next round will not include any unnecessary waiting as this is enough to drive us all insane. We will start IV fluids at home prior to the next round. GCSF shots start again tomorrow to keep her numbers up. We can see the effectiveness of Captain Chemo since there was a sharp decline in AFP (Gia's tumor predictor). AFP was 285,000 prior to chemo and 31,000 prior to starting Round 2! Prior to Round 3, scans will be done to evaluate the size and placement of the tumors.
Date:
Tuesday January 13, 2004
Today Gia woke up feeling well, she ate her waffles and ice cream for breakfast (her request) and played her games. By the early part of the afternoon she started to have a bad cough, but no fever. She took a nap and woke up with a 102.4 fever. We immediately notified her oncologist. He decided it would be appropriate to admit her into the hospital. We finished her breathing treatments, gave her the daily GCSF shot, and then took her in. Once there, they placed us in a treatment room until a room was made available, and they began tests to determine the cause. Within an hour it was determined to be Respiratory Syncytial Virus (RSV). RSV is the leading cause of pneumonia and bronchiolitis in infants. This virus is especially bad for preemies, infants born with chronic lung disease, infants born immunocompromised, and infants with certain forms of heart disease. Well for someone with CF, diagnosed with BPD during her stay at the NICU at CHOP, limited immunity due to chemo, and being a preemie, this could offer many challenges. They immediately began antibiotics (not for RSV, since viruses are not impacted by antibiotics) to protect against potential bacteria infections. She most likely caught the virus during her extended stay at the hospital last week (one of the main reasons we prefer to provide any medical care at home). When I left the hospital, Gia was resting comfortable. She did not have a need for oxygen or any other assistance. Hopefully she will be home within the next 5 days.
Date: Friday January 16, 2004
After 3 fun filled days in the hospital Gia has returned home!! She is recovering from he RSV, and she will take oral antibiotics for a minor bacteria infection in her lungs. We feared that our stay would be extended due to a blockage in Mr. Wiggles (her central line). By mid afternoon today the blockage was cleared. Thank God, because they could have had to replace the line!!! We were released at 6:30, probably because they were tired of us asking if we could leave! Gia still has a slight cough, but she does not have a fever. She received VCR yesterday, so now she is stating that "everything hurts!" This usually will last a day or two.
Date: Friday January 16, 2004
We have been home for 2 hours and Gia is already doing better. During the past 2 days she did not eat much, but now she has more than made up for that. When we first went home she was quite upset that we took her "blankie" to wash it (hospital germs). Once she got over that she had some provolone cheese, turkey, ice cream on a stick, ice cream sandwich, 2 waffles, yogurt, and orange juice. Her nutritionalist would be proud!
Date: Tuesday January 20, 2004
Gia
is very excited about a package she received today. A special thank
you to Megan and her 5th grade
class at St John's in Yardley, PA. They sent a care package filled with Gia
surprises. The package included handmade get well cards from the
entire class!!! Gia had fun reading all the cards and playing the
games in the magazines. The package was great, but of course it
caused Dad to have to subscribe to the Nick Jr. magazine for the next
year. Gia has been acting like her usual self. Since returning from the hospital, she has continued to eat very well and tolerate her daily shots in her legs. Mom and Dad on the other hand, seem to have caught a bug that she is recovering from. Gia thinks it is rather comical that her parents are walking around the
house with masks on their faces.
Date: Thursday January 22, 2004
Gia had her CT scan today. For the first time the CT scan was done without sedation. Gia did very well, she remained still throughout the scan. The tumors significantly decreased in size, unfortunately there is still tumor on the left side. Gia is responding very well to captain chemo. No evidence of metastases and her lungs look good. She is still on GCSF and she received the final dose of VCR for round 2. Round 3 will begin soon!
Date: Friday January 23, 2004
What a
day!!! We received an updated AFP number, 2742, which is much lower
than we anticipated. The home health care nurse came out to draw labs today as Gia's counts were a bit low yesterday.
The results were acceptable, so there was no need for a transfusion. We will
do one last neupogen shot this evening (although the shots will probably
continue during the later rounds). Frank's coworkers gave Gia a gift
today, over 700 Disney Dollars. They wanted Gia to use them in
Disney when she is through all this stuff. On Sunday we will start IV fluids at home. We are hoping that the home IV fluids help us to avoid extra waiting in the hospital. Monday morning Gia visits the oncology clinic and will most likely be admitted to start Round 3. This round will match the prior rounds: Cisplatin on Day 1, 5-FU and VCR on day 3, VCR on Day 10 and VCR on Day 17. If all goes well she should have to stay in the hospital for only
3 days. Today Gia is feeling well, eating well and ready to play!
Date: Monday January 26, 2004
Gia is now home playing with her Strawberry Shortcake house. After a very snowy drive we discovered that Gia's blood counts and ANC were a bit low for chemo so we spent the day in the oncology clinic waiting for a transfusion. We are hoping that Gia will be ready for round three on Tuesday, February 3. On Monday, February 2 the home health care nurse will come out to draw blood. Based on the results, the hospital can be prepared with chemo or blood. Less time in the hospital is crucial for Gia since all hospitals are germy! Gia weighed in at 33 pounds this morning. Although part of this may be from the IV fluids, it seems that her special milk is helping. This is an old recipe of whole milk, heavy cream, dry milk powder and salt that put her on the growth chart in 09/2001. A week off is a blessing for all of us.
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