In December of 2002 Elicia Giovanetti was diagnosed with a medical need that has required special care and attention. Elicia is 8 years old and the daughter of Jeff and Debra Giovanetti. Elicia has an older sister, 9 year old, Tiffini. The Giovantti family are members of Faith Baptist Church, Greenville, South Carolina.
Received January 1, 2004
"Heal me, O Lord and I shall be healed; save me, and I shall be saved: for thou art my praise." Jeremiah17:14
We are very thankful for what the Lord has done for us. Elicia is cancer free at present and we praise the Lord for this. Of all the people we met at St. Jude during the past year of 2003, only one little boy is living. All others have passed away. Life is so precious, we need to cherish every moment we have with each other. The Word of God has become very precious to me. Psalm 73:28 "But it is good for me to draw near to God: I have put my trust in the Lord God, that I may declare all thy works." He is able to comfort us during our darkest hours.
Last year at Christmas time, we were not sure if Elicia would live. She was very sick with bacterial meningitis. The Lord has spared her life and for that we are grateful. The Lord showed me a verse in Psalm 118:17. "I shall not die, but live, and declare the works of the Lord. The Lord hath chastened me sore: but He hath not given me over unto death." Only the Lord knows our future. We are thankful for each day He gives us and we know it is His hand that upholds us. Psalm109:26-27 "Help me, O Lord my God: O save me according to thy mercy: That they may know that this is thy hand: that thou, Lord, hast done it."
Elicia is learning to walk again. She has learned to accept the limits that she has. Her hair is beginning to grow back and her speech is improving each day. The largest challenge for us now is getting out. With two children in wheelchairs, I need assistance to do the smallest things. I am thankful that the Lord has provided me with a wonderful lady to help me with this task. Her name is Diane. She is a dear woman whom the Lord has provided so graciously to me. She is a dear Christian and has a meek, quiet spirit.
Tiffini is having some issues with reflux and also her feet. We are praying the Lord will direct us as to what we need to do to help her. Surgery is an option for both the reflux and the feet, but we are not sure if this is the avenue we should take. Pray the Lord will direct us, so we will know the correct path to take.
Thank you for all your prayers, cards of encouragement and help that you have given our family this past year. We are grateful to you and to the Lord for all that has been done on our behalf.
Jeff - Debra- Tiffini and Elicia
Received Tuesday, August 19, 2003 at 6:00 P.M.
Just talked with Debra. The in-laws have shown up and are helping a great deal. In addition, Debra spoke with Tiffini's social services coordinator and has arranged for an aide to come for a week or two. Praise the Lord! We still may need to offer some help over the weekend, so if you can help, please let me know. Right now, we need to continue to pray for physical, emotional and spiritual strength. This is a very trying time as the family attempts to ease back into a routine of "normal" daily living.
Received Sunday, August 17, 2003 at 9:50 P.M.
At this point, it looks like Elicia and her family will be coming home this Wednesday some time late in the evening. Elicia is still struggling with a few physical problems, so pray that she will actually be able to make the trip. She will be home for about 2 weeks then go back to Memphis for a week. The family will be coming home and returning to Memphis periodically until Elicia is stable and well on her way to recovery.
I will be arranging meals and possibly other helps over the next few weeks. If you would be willing to take a meal to the family, or if you would be able to help in some other way, please let me know.
The most immediate need is for the evening meals the first 3 days that the Giovanettis are home. Could you please consider doing a simple meal for them on one of the following dates?
Thursday, August 21
Friday, August 22
Saturday, August 23
If you would be able to help with this, let me know asap.
Thanks for your continued prayer and willingness to help.
ReceivedSaturday, August 2, 2003 at 11:12 P.M.
Since the last update, Elicia has been through much. You may recall the doctors were very concerned about the swelling behind one of Elicia's eyes. This is potentially a very dangerous condition. They were not sure if the eye problems were due to fluid on her brain or reflective of some difficulty with the eye itself. Much effort was put into determining the source of the swelling and the solution to the problem. It seemed for a while, that the only answer would be to put a permanent shunt (a tube for draining) into Elicia's skull. And, yes, they did mean permanent! In an effort to fully inform Jeff and Debra of the risks of such a procedure, the doctor told them that, of the 1,500 of these he has "installed," only about 10 of them have been in place with no problems. He told them that, usually, long after the child has fully recovered from the problems of surgery and the cancer itself, they continue to require frequent care and often surgery to maintain the shunt. So, as you can imagine, Debra has been praying fervently that God would intervene.
About a week ago, the doctors inserted a "temporary bolt and tube apparatus" into Elicia's head to determine the degree of the swelling. She was hospitalized during the several days that it took for this "test" to be complete. The process was uncomfortable and stressful for Elicia (and Mom). The apparatus came out a few times and reinsertion was very painful. In addition, there is concern over the possibility of infection. Extreme sterile conditions are necessary whenever a foreign object (like the tube) is inserted into the blood stream or spinal fluid. Debra is concerned that the tube could've picked up something when it slipped out and then carried it into Elicia's spinal fluid. Pray that Elicia will not get sick as a result.
The good news is the test revealed that the level of pressure is either going down or is not as severe as they once thought. Elicia will not require a permanent shunt!! Praise the Lord!! There is hope that, as Elicia is weaned off of the chemo drugs, this problem will resolve itself. If it does not, Elicia will see an ophthalmologist when she returns home.
Elicia is now finished with all of the chemo (and other cancer drugs) that she will take. The doctors will gradually wean her off of those meds in preparation for the Giovanetti's return home in two to three weeks. Debra has noticed Elicia becoming more and more alert as she "comes off" of all of the drugs. Elicia even asked for some schoolwork to do. She completed 4 pages of math yesterday....and got all of the answers correct! When Elicia was writing letters to her friends, Debra noticed Elicia's handwriting is becoming much more legible. Praise the Lord!
When I asked Debra about Elicia's long-term prognosis, she said that there are too many unknowns still. Had Elicia finished the complete course of treatment, the statistics say that she would've had a 92% chance of no reoccurrence of cancer. As you may recall, because of the seemingly rapid hearing loss, the doctors recommended that they not go through with the last round of medications. So there really are no "stats" on what they could expect. Isn't it comforting that the stats have no affect on God's thinking or His ability to heal!
Since late December or early January, there has been no sign of the tumor or any cancer cells. Unlike other cancers, however, that have "5-year cure zones," this type has no "guarantee." There will not come a time when the doctors will declare Elicia cured. There is the possibility that this could come back at any time during her life. What would any of us do at times like this is we did not have the blessed assurance that our loving, Heavenly Father is in control. Take the time to read Psalm 104. It is such a beautiful description of God's loving creation and control of all things.
Psalm 145: 8&9 - "The LORD is gracious, and full of compassion; slow to anger, and of great mercy. The LORD is good to all: and his tender mercies are over all his works."
Please continue to pray for physical healing for Elicia and for the spiritual and emotional strengthening of this whole family!
Received Friday, July 4, 2003 at 2:00 A.M.
It has been determined that, because Elicia's cancer is life threatening, they will go on with the chemo treatments. The prayer continues to be that Elicia will suffer no further vision or hearing loss. She will begin her last "round" of chemo this Sunday. Please be in prayer.
At some point in the near future, they will have to determine if the pressure is from an eye problem or fluid on Elicia's brain. If it's the eye, they'll go in and drain the fluid. If it is pressure on her brain, they'll put in a shunt.
As you can imagine, these are very serious concerns. Please continue to pray for wisdom for the doctors as they advise Jeff and Debra.
Received Monday, June 30, 2003 at 9:00 P.M.
Please pray with me tonight for little Elicia. The medications intended to destroy the tumor are taking a toll on her body in other ways. She continues to experience swelling near her optic nerves. The doctors are not sure if the swelling is due to pressure on her brain or possibly glaucoma, a side effect from one of the drugs. They will review all of the facts and options tomorrow (Tue) and determine what to do to relieve the swelling. At present, the swelling is so severe that they are concerned Elicia could loose her eye-sight suddenly and irreparably. Please pray tonight and throughout tomorrow that the doctors will have wisdom in how to help Elicia.
In addition, Elicia's hearing continues to deteriorate. At the doctor's suggestion, they will discontinue the drug that causes hearing loss. If it does not get any worse, Elicia will not require hearing aids although there are some "levels" of sound that she will not hear again.
Debra told me tonight that of the 20 families that they have met while in this program at St. Jude, only 2 have had "good news" with regard to their child's long-term health. All of the other children have either died or been sent home with no hope. Debra has had many opportunities to witness to these folks, sharing with them the real hope that we can have in the Lord!
Continue to pray that God will comfort and strengthen this family as He tenderly brings them through this time.
Received Tuesday, June 17, 2003
I talked with Debra this morning. Elicia has been in and out of the hospital over the last few weeks with one infection after another. That is not really unusual considering how much stress her body is under and how low her counts have been.
Yesterday, they found that Elicia's optic nerves are swollen revealing that there is more pressure on her brain. The tests they did yesterday show that there is no new tumor. Praise the Lord! Today, the will do a lumbar puncture (very painful) to determine how much pressure is on her brain.
While Elicia has been suffering with mouth sores, headaches, and many other discomforts due to the medications, the doctors tell them it is a good thing that she's having these problems. They say that the kids who don't experience these difficulties often have a reoccurrence of their cancer.
Elicia has had some hearing loss and stands at risk of losing even more. Please pray that when all is said and done, she'll have functional hearing.
A recent eye exam revealed some vision loss, primarily in the left eye. As I understood Debra's explanation, some of the optic nerves and muscles that wrap around the head were damaged during the initial surgery. As a result, Elicia's eyes are not tracking as well as they should. She has about 20/25 in the right eye and 20/75 in the left.
Elicia was able to ride a stationary bike a couple of days ago. That was a real encouragement to Debra. Elicia also continues to improve in her school work. Although it is exhausting, she continues to read and work on math problems almost every day. Debra has been very faithful to help Elicia achieve as much as she can. The prayer is that Elicia will be able to pick back up with her normal course of studies when she is physically able.
On a humorous note, Debra was talking about how little things in God's Word have stood out to her with new meaning. You may recall that for many weeks, Elicia could not hold her head up. Those muscles were cut and have needed much time to repair and strengthen. At a time when Debra was very worried about this, she came across Psalm 3:3 "But thou, O Lord, are a shield for me; my glory, and the lifter up of mine head." THE LIFTER UP OF MINE HEAD!!! Debra couldn't help but chuckle as she was reminded that our God is the source of ALL strength, and that He, should He choose, will be the one to strengthen little Elicia back to health.
Please continue to pray for the spiritual and physical needs of this dear family.
Received Tuesday, May 20, 2003 at 10:32 A.M.
HI. I just got off the phone with Debra and thought I would send this update to you. Elicia is back in the hospital. On Sunday at 2am she developed another high fever! She has a infection in her blood that could be caused by the GTube but they are not sure. The infection specialist are coming to check it out but she will be in the hospital at least for 4 days. This is the same kind of infection that caused her bacterial meningitis. She is now on 3 antibiotics to treat this. As of yesterday the fever was gone so this maybe a good sign! So the specialist need to determine if this is in her central line and if so they may have to remove it and that would move all her treatments back and require their stay to be longer. Elicia responded to her chemo drugs better this time around!! Also pray for Debra as she is trying to decide on how to school Elicia .
Jeff has been sick too and had a fever himself yesterday. Tiffini isnít sleeping well either so this has added pressure on Debra. She did say she slept last night and was very happy about that!! Debra said that she still sees the drive in Elicia to get out and do things. Before she went into the hospital they were on a playground and Elicia wanted so badly to be able to go down slides and do all that stuff!!! Debra said that she is still speaking and responding to "school associated " questions which is encouraging to them. So we need to pray that they will be able to locate the cause of this infection and that it can be contained. It would be a set back for them if they had remove the Central Line bc of this infection! I think we need pray for just everyday needs as well. Living away from home like this is hard on everyone and its easy to be impatient with each other! As of now Jeff is still staying in the hospital with Elicia and Debra is at the Target House with Tiffini!!
Received Monday, April 21, 2003 at 10:33 P.M.
Please pray for Elicia tonight and over the next few days. She has been admitted to the hospital with a fever. This is especially of concern because her ANC (indicator of the strength of her immune system) is at zero right now (should be in the 10 thousands). Two children in the same program as Elicia have died within the last week due to an infection brought on by their compromised immune systems. As you can imagine, Debra is quite concerned.
Received Thursday, April 17, 2003 at 10:22 P.M.
It was such a blessing to see Elicia and Debra on their recent visit home. Elicia was able to come to church, to visit with some of her friends and even able to attend her team's soccer game. Debra said that she saw more improvement in Elicia that week than in all the time they had been gone. Praise the Lord.
Now, Jeff, Debra, Tiffini and Elicia are back in Memphis and are in a new routine. Three days out of each of the next 4 months Elicia will receive the main part of her treatment. She is administered other medications daily. Her counts are remaining very low, increasing her susceptibility to infection. So, for now, they will keep her in isolation. That basically means that when she's not at the hospital, she's in her apartment. It is just too risky to allow her in the common areas. Please pray for the whole family as they "hibernate."
Tom and Crystal (Jeff's parents) visited this past week and will head home tomorrow (Fri). It was a huge help to J & D to have Grandma and Grandpa around for a while.
The incredibly generous guys at the Greenville County Fire Department have collectively donated enough of their own "comp" time to Jeff to enable him to stay in Memphis for the duration of Elicia's treatment. Although, Jeff will not need all of the time, the men actually donated enough for Jeff to be off until November!!
Early in their stay in Memphis, Debra met Karen (don't know last name), a former teacher at Hampton Park Christian School in Greenville. Karen told Debra about the church she attends and mentioned the name of a Dr. Hale. He is a Christian and attends Karen's church. Karen told Debra about him just in case D ran into him. As the Lord would have it, Dr. Hale has been assigned as Elicia's primary physician. Debra was thrilled!
Cards, pictures, letters....ANYTHING would be a real encouragement to the Giovanettis right now. If you would like to send something, their address is:
Jeff and Debra Giovanetti
Rm. # 507
1811 Poplar Ave.
Memphis , Tenn 38104
Please continue to pray for the Giovanettis; that they'll grow closer to the Lord and that Elicia will be free from any infections.
Received Monday, March 24, 2003 at 11:27 A.M.
Praise the Lord, Elicia is home for the week!! She and her family arrived late Saturday night and were able to come to church yesterday! It was such a blessing to see Elicia surrounded by her friends taking turns pushing Elicia's wheelchair, holding her hand and doting over her! The congregation sang Elicia's favorite chorus, "As the Deer." Elicia didn't miss a beat in Junior Church. She sang songs and even answered some of the Bible questions! What an encouragement to her heart and to the hearts of all watching.
Elicia is doing very well. She obviously understands everything that is said to her, but is still a little slow with her speech. But, praise the Lord, she is speaking!! She has been reading books and doing math. It will take more time for her to continue to recover from the syndrome, but she is making progress daily.
Tonight, the Giovanettis will have "Christmas" with all of their extended family. What a joy that will be for them all!
The family will be taking care of business while home this week, and have a few routine doctor/dentist appointments to fit in. In addition, they hope to be able to visit with some more of Elicia's friends before heading back to Memphis next Monday.
We are organizing meals for the family beginning tomorrow evening (Tuesday, 3/25). If you would be able to prepare a small meal for Jeff and Debra one night while they're home, please let me know as soon as possible. Reply to this e-mail, or call me at 244.9800. It truly just needs to be a small meal, as Elicia is not yet eating solids and Tiffini requires specially prepared foods.
Thank you for your continued prayer support and willingness to help in so many ways!
Received Thursday, March 13, 2003 at 3:28 P.M.
Just got the following update from another friend of Elicia. Thought you'd all like to hear.
They are still in the Target House but in an isolation room because of Elicia's staph infection. The infection is located in the site where the G Tube was. They replaced the G Tube which was very painful for Elicia. However, she has been improving daily.
Elicia will begin chemo on April 3. The family is hoping to be able to come home for a week before that begins. Jeff needs to check back in with his job and they think it would be great for Elicia if she could see a few of her friends and her home.
There have been several gradual improvements in motor control and speech. Elicia is eating some soft food ( she had bacon yesterday and loved it). They have been doing some school work with her too!! Debra sounded very encouraged about Elicia's progress and asked that we continue to pray for a full recovery. One of the nurses that helps them had a little girl with the same condition as Elicia and within 18 months she was back in school.
Received Wednesday, March 5, 2003 at 5:03 P.M.
Thank you for your continued prayers for Elicia and her family. Elicia has completed her radiation treatments and will now have a 3 - 4 week period of rest before starting chemo. At this point, there is no sign of the cancer. Praise the Lord!! In addition, Elicia is talking! Her speech is monotone and "choppy," but intelligible! She is even reading and doing math problems!! She has had a couple of phone conversations with her best friend, Jessica! All of this brings much hope that Elicia will fully recover from the syndrome! Please continue to pray for her daily progress.
Jeff, Debra, Crystal and the two girls are all still in Memphis. The family is now staying at the Target House, an apartment facility owned by St. Jude. When I spoke to Debra around 4:30pm today, they were in the process of moving Elicia to the Target House. Unless complications arise, Elicia will finish the rest of her treatments on an outpatient basis. At some point soon, there are plans for Crystal to return to Greenville for a while. When she goes back to Memphis, Jeff may come home for a while as well. All of that is still in the planning stages.
Other prayer requests:
Elicia has had shingles for about a week and is still struggling with that.
She has a staph infection at the sight of her feeding tube.
That Jeff and Debra will have patience and wisdom in handling the needs of their two sweet girls while at the Target House.
Received Tuesday, February 4, 2003 at 2:34 P.M.
Elicia continues to improve. She has begun to use her fingers to answer questions and has even been doing simple addition problems. She is now able to push herself up to a sitting position, though unable to stay upright.
Because Elicia had been having headaches, the doctor ordered a CT scan yesterday. Praise the Lord, everything came back normal.
They have yet to do the "swallow" test. Will let you know when we hear those results.
Mondays, Wednesdays and Fridays are very busy days for Debra. That is when she has to spend a great deal of time dressing the central line. Please pray especially on those days that things will go well.
Continue to pray for physical, emotional and spiritual strength for all of the family members and that each one of them, in yielding to our loving Lord, will enjoy His sweet peace.
Received Tuesday, January 28, 2003 at 4:32 P.M.
Praise the Lord! St. Jude was able to round up a suitable wheel chair for Elicia! The daily walks around the hospital seem to be very uplifting for Debra and Elicia. Thanks to you who offered to try to help resolve this problem. In addition, Elicia hasn't thrown up in 3 days! The docs have apparently found the right combo of meds! Thank you for your prayers!
Elicia squeezed the doctors hand on command this morning, an encouraging sign for both Debra and the doctor. Each little display of lucidity brings new hope that Elicia will soon "come out" of the syndrome. At the writing of this update, they are taking Elicia down to physical therapy to see how well she'll do with standing up. Debra was very excited at the prospect.
Some time within the next couple of days there are plans to take Elicia to another nearby hospital, Le Bonheur, for a "swallow test." If Elicia passes that test, they will begin trying to give her solid foods. Debra believes having solid foods would help Elicia's little body function better as well as give her more energy as she tries to recover.
As you may recall, the doctors at Duke had started Elicia on Prozac to try to bring her out of the syndrome. It has been determined that the Prozac is not having the desired effect, therefore, they're taking her off of it tomorrow.
Please continue to pray for healing for Elicia. Pray also for the physical, emotional and spiritual strengthening of the family.
Psalm 119:2 "Blessed are they that keep his testimonies, and that seek him with the whole heart."
Received Monday, January 27, 2003 at 1:36 P.M.
The Giovanettis have settled into the routine of radiation treatments Monday through Friday with a break on Saturdays and Sundays. Elicia is showing little signs of improvement now and then, but no major breakthrough yet. The radiation is really giving Elicia a hard time. She has been throwing up often and not responding well to the medications given to prevent it.
At one point the doctors were considering changing Elicia to "out patient" status. A few days ago, the family brought Tiffini to the hospital. When the doctors fully realized the amount of care required for Tiffini, they decided to keep Elicia in the hospital. D & J were very thankful for that. In addition, they are trying to speed up the process of getting the Giovanettis into an apartment rather than the Ronald McDonald House.
Because of Elicia's "paralysis," she lacks the muscle control to sit unassisted. She needs a special kind of wheel chair. It is quite unusual, but St. Jude has been unable to provide a suitable wheelchair for Elicia.
Please pray that:
the doctors will be able to regulate Elicia's medication to settle her stomach,
the hospital will be able to provide a suitable wheelchair for Elicia,
the staff is able to move the Giovanettis into an apartment quickly, and
that the family will look to the Lord for the strength they require.
Received Sunday, January 19, 2003 at 4:02 P.M.
The Giovanettis have settled into a routine now. Elicia is receiving her radiation treatments Monday - Friday, then having two days of rest on Saturday and Sunday. Little by little Elicia shows signs of improvements. This week Debra gave Elicia a little taste of a candy cane by putting it in her mouth. Debra then told Elicia if she wanted more, she'd have to stick her tongue out for it. Elicia did! This may sound insignificant, but every little sign of increased awareness offers new hope that Elicia will soon regain speech and muscle control.
This morning, Debra and Crystal (Elicia's grandma) went to a service held at the hospital. A group from a local church was there ministering to the patients. It was such a blessing for Debra and Crystal to be with fellow believers and worship the Lord together. It was the first time since all of this began that Debra has been able to be in a service.
Please continue to pray for Elicia's recovery and for the physical and spiritual strengthening of the entire family.
Psalm 147:3 "He healeth the broken in heart, and bindeth up their wounds."
Received Tuesday, January 14, 2003 at 9:14 P.M.
Elicia's surgery went well today. The central line is in place. She will, however, require a blood transfusion sometime tonight. Because all tests are not complete on J & D's blood, neither of them can provide the blood this time. Lord willing, they will be able to do so in the future. Please pray that all goes well with that tonight.
Today J & D were told that all tests reveal no sign of cancer anywhere else in Elicia's body. Praise the Lord! Tomorrow, they will begin a 6.5 week course of radiation. Elicia will receive treatments every Monday - Friday. She will receive the highest dose at the back of her head where the tumor is, and a lesser dose on her spine. The treatments can be isolated since the cancer seems to be.
There are many unpleasant short-term side effects, but most disheartening are the possible long-term effects including hearing loss and difficulty in learning new things. In addition, it is uncertain what effects the bacterial meningitis may have had.
After the 6.5 weeks, Elicia will have a little break from treatment. If she is able, she will come home for that 4-5 week period. Let's all pray to that end. When Elicia returns to St. Jude, she will begin 4 months of chemo.
They found out today that they will not be able to use Elicia's hair for a wig after all. They need much more hair than she has right now.
Please continue to pray for the day to day needs of the family. Getting enough sleep seems to be a problem for everyone. They are all weary of the physical and emotional challenges they're facing.
2 Corinthians 13:14 - "The grace of the Lord Jesus Christ, and the love of God, and the communion of the Holy Ghost, be with you all. Amen."
Received Monday, January 13, 2003 at 8:46 P.M.
Jo Zimmer just got off of the phone with Debra and passed on some info to me. Things went well today. Elicia seems to be more alert and paying more attention to what's going on around her. The speech therapist visited today and told J & D that Elicia will likely be talking again within 3 weeks. Praise the Lord!!
Tomorrow (Tue, 1/14) Elicia will undergo surgery to have the "central line" put in her chest. In addition, J & D have to make another decision by tomorrow. In anticipation that Elicia will loose most of her hair during treatment, St. Jude offered the option to go ahead and cut Elicia's hair right now. Her own hair would then be used to make a wig. They must do it immediately because, once treatment begins, Elicia's hair will become brittle and unsuitable for a wig. Please pray that the surgery will go well and that J & D will be in agreement regarding the wig.
The doctors are talking about moving Elicia to "out-patient" status as soon as possible. Once she has recovered from tomorrow's surgery, the staff will train J & D to care for the "central line," and discharge Elicia from the hospital. The family would remain in the Ronald McDonald House there in Memphis and continue to go to St. Jude for regular treatments. D is more than a little concerned about taking Elicia out of the hospital until she is out of the "syndrome." Pray that the doctors will have wisdom as to the appropriate timing of the discharge and that J & D will gain the knowledge and confidence they need in caring for Elicia outside the hospital.
Jo said that Debra was in good spirits tonight, sounding like her "old self." They continue to be overwhelmed by the hundreds of people regularly praying for them and send their thanks to all of you!
By the way, we have found a home for Cricket! She's doing well and happy with her new "Aunt Kathy." :)
2 Corinthians 1:3 - "Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;"
Received Sunday, January 12, 2003 at 10:08 P.M.
Elicia had a restful day today. Tomorrow (Monday, 1/13) she will have a long, extensive bone scan to determine if there are any traces of cancer anywhere else in her body. At this point, all other tests indicate that there is not. If this scan comes back negative, Elicia will be considered an "average" risk patient rather than "high" risk. That will mean a less radical course of treatment. Now that the Giovanettis are at St. Jude, they are meeting other families in similar situations. They've met a couple whose child was in this "shut down syndrome" for 2.5 months! Needless to say, it has given them hope to see this little boy running around the Ronald McDonald House.
Tuesday will be a big day. They will be putting in a "central line" in Elicia's chest. It will be used to administer meds, nutrients, etc. The staff will train J & D how to care for it. That is a little intimidating to D. Please pray that all goes well and that J & D are able to catch on quickly.
The shunt/drain in the back of Elicia's head has been removed. That is a real answer to prayer. There was concern at one point that it might be needed permanently, but it appears that the fluids on the brain have subsided and are not going to be a problem.
The whole family is resting better in these new facilities and is gearing up for the 8 week regime of radiation (no chemo at this point) which is to begin on Wednesday.
If you would like to send cards of encouragement, mail to:
The Ronald McDonald House
Attn: Mr. & Mrs. Jeff Giovanetti
535 Alabama Ave.
Memphis, TN 38105
Thank you for your continued prayers.
Isaiah 26:3 - "Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee."
Received Saturday, January 11, 2003 at 2:36 P.M.
Just talked with Debra. She and her in-laws arrived in Memphis around midnight, Thursday night and crashed in a hotel. After checking out of the hotel on Friday, they spent most of the day getting oriented at St. Jude and getting moved into the Ronald McDonald House (RMH). The RMH is very spacious and clean. Debra says it is a wonderful place to bunk for a while.
J & D are thrilled with St. Jude. The facility is well-equipped, spacious and immaculately clean! According to D, the staff is attentive and friendly, and totally on top of things. They apparently are being very thorough in their testing and evaluation of Elicia's condition.
Elicia is still running a low grade fever; cause unknown. A "bug" has shown up in Elicia's spinal fluid, but at this point, the docs are not sure if it's something new, or traces of the bac. men. Tests should tell them.
Now for the really EXCITING news!! Thursday evening, after receiving a dose of Benedryl, Elicia "came out" of the "syndrome" for about 30 minutes. When the nurse asked Elicia who was standing next to her, she replied, "my daddy!" Elicia squeezed fingers when told to do so, raised her head on command, and at one point said to Jeff, "I need a hug." As you can imagine, Jeff was elated!!! He felt like this was the first time he was really seeing Elicia inside that little body! After a while she fell asleep. When she woke the next morning, she was still in the syndrome. The docs have no idea what happened. On Monday, they will be doing tests with the Benedryl to try to elicit that same response again. Debra is praising the Lord and thanking Him for this precious sign of hope for their daughter. Please pray that this will be only the beginning of Elicia's gradual return to "herself."
Lamentations 3:22-23 "It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness."
Many of you have requested an address for J & D. Debra didn't have it handy this morning. I'll let you know as soon as possible.
Received Thursday, January 9, 2003 at 10:12 P.M.
At the writing of this update, Debra, Tiffini, Tom and Crystal are presumably still on the road to Memphis. After taking care of several items of business and getting re-packed for what could be a 6 month stay, they finally drove away from Greenville around 2:15pm. Glenda Manwaring (Jeff's sister), Jo Zimmer (friend from church) and I met Debra at 10:00am this morning to help her with her errands and packing. Because Debra had arrived home so late last night, it was not until today at lunch that they were able to enjoy the delicious meal you ladies prepared! Boy, did it go over well. Tom even took a few pieces of chicken in a zip-lock bag to "help keep him awake." :)
They were all grateful to have a home-cooked meal rather than having to stop at a fast food place on the road.
Not much word on Elicia today. I know she had an MRI this morning, but don't know how it went. Will send news as it comes in. Let's be praying that all of the prep work will go smoothly over the following week and that treatment will begin on schedule.
Philippians 4:19 - But my God shall supply all your need according to his riches in glory by Christ Jesus.
Received Thursday, January 9, 2003 at 9:36 A.M.
I'm writing all of you to get the word out about an immediate need for the Giovanetti family. Debra will be leaving today around noon to join Jeff and Elicia in Memphis. They will be gone from home for up to the next 6 months. We are trying to find a temporary home for Elicia's little dog. "Cricket" is an 8 year old, short-haired Terrier. She is house trained but could be kept in a fenced in yard if you'd rather not have a dog in the house. If you would be willing to take her for a while, or know of someone who could, please let me know ASAP. Ideally, this needs to be resolved today. I will be away from my computer, so please call rather than e-mail. You can call me at 244-9800 or 630-2357.
Thanks for your help.
Received Thursday, January 9, 2003 at 12:51 A.M.
What a blessing it was to see Debra's face when she walked into her home for the first time tonight!! As she entered the front door, she exclaimed in astonishment, "This is not my house!" The tears quickly began to flow as she walked through the house seeing all of the precious acts of kindness that bore the loving fingerprints of you dear people. She was completely overwhelmed with how God had, once again, shown His love through the sacrifice and hard work of His children. The living room and dining have been freshly painted. New window treatments and furniture have been placed in the living room. Much-needed storage cabinets have been put in place throughout the home. You all know most of what was done in the kitchen; new stove, dishwasher, sink, flooring, window treatments, etc. In addition to the love offering taken at Faith Baptist Church, Debra and Jeff's home church, friends from the Greenville Fire Department, Southside Fellowship and others around the community have contributed money and time to show their loving support for this dear family. On behalf of Jeff and Debra, thank you so much for your sweet sacrifice!
While I was there tonight, Debra talked with Jeff for the first time since they parted at Duke earlier today. Jeff said the flight went very well and that Elicia was doing fine. They are getting settled in now at St. Jude in Memphis, TN. Jeff says the facilities are incredible! They have cut off Elicia's "feeds" so she'll have an empty stomach for tests first thing in the morning. Please pray that she and Jeff both get a good night's sleep tonight. Elicia will go through a series of tests, scans and other prep work over the next week. If all goes well with that, they will begin the chemo and radiation treatments.
There will be an 8 week stretch of treatments. If, after the 8 weeks, Elicia has pulled out of the "syndrome" that she's in now, they will allow her to come home for 3 weeks. That will be some time in mid-March. If she is still struggling with the syndrome, she will have to stay at St. Jude for the 3 week period. Following that 3 weeks, Elicia will begin a 4 month routine at St. Jude. The entire course of treatment could be up to 6 months. It is unknown what will be needed at that point.
There is one matter that we need to help Debra with right away. Elicia has a dog for which we need to find a temporary home during their stay at St. Jude. "Cricket" is an 8 year old, short-haired Terrier. She is house trained but could be kept in a fenced in yard if you'd rather not have a dog in the house. If you would be willing to take her for a while, or know of someone who could, please let me know ASAP. Ideally, this needs to be resolved Thursday, 1/9/03.
As I left Debra tonight, she was praising the Lord for His goodness and constant care for her family. When asked if she wanted anyone to stay with her tonight, she said, "Oh no, that's not necessary. My Lord is here with me."
Psalms 23:1 - The LORD is my shepherd; I shall not want.
Praise the Lord!
Received Wednesday, January 8, 2003 at 2:55 P.M.
After having the flight schedule changed several times today, it looks like Jeff and Elicia will be leaving Duke around 3:45pm. Debra, Tiffini and Jeff's parents will then leave to drive home to Greenville. That will put them in town no earlier than 8:00 or 9:00pm. Please pray for safe travel for all.
Elicia is stable. No change in her condition.
The food that we've prepared for the family will be waiting for them when they arrive. Thank you to all of those who helped!
Received Monday, January 6, 2003 at 10:35 P.M.
Today has been a little trying for J & D. In order for Elicia to participate in the program at St. Jude, she must be able to begin their course of treatment within 28 days of her surgery. There is much prep work to be done (scans, blood work, etc.). The staff of St. Jude needs one week to accomplish all of that prep work. So they are telling J & D that they must have Elicia to St. Jude by Wednesday, 1/8 or it is likely that they'll not be able to accept her. The attending physician at Duke does not seem motivated to proceed with the transfer. Policy requires that he initiate the transfer and release Elicia from his care. There is also concern on the part of all of the doctors as to what to do about the shunt/drain in Elicia's head. They feel that they need to remove it for transport (something to do with the pressure in the airplane).
The prayer request for tonight is that Dr. George, the attending physician at Duke, will make this a priority first thing tomorrow. He needs to personally contact Dr. Gajjar at St. Jude to get things rolling. After all of their research, J & D are convinced that this transfer offers Elicia the best care possible. Pray that the Lord work out the details as He sees fit.
It looks almost certain that Debra will not be coming to Greenville on Tuesday. It is likely to be Wednesday or Thursday. I will keep you all posted as soon as I know when they'll be making the trip. Thank you all for your kind offers to help with the meal and errands and your willingness to be on "standby" 'til we know when they are coming.
Jeremiah 29:11- For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end.
Received Sunday, January 5, 2003 at 11:08 P.M.
Praise the Lord! Elicia has had an exciting day! Debra is very encouraged at Elicia's responses while working with an Occupational Therapist. The OT held an object in front of Elicia and told her to "hit" it. Elicia immediately swung her arm around in what seemed an obvious effort to comply! She inadvertently hit her own face. When Debra made a little joke about it, Elicia giggled! There were several other positive responses as well. Elicia giggled several different times during the day in response to little jokes. This is more interaction than they have seen in over 2 weeks!!! As you can imagine, the family is thrilled to see a little of their "old Elicia" breaking through!
The OT explained that when a child is pulling out of this syndrome, it is common for them to regain control of those muscles closest to the torso first, then out to the extremities. This seems to be exactly what may be happening with Elicia. When she swung for the object, she seemed to have control of her shoulder. Let's keep praying that Elicia will regain more and more control each day.
The plan is still to transfer to St. Jude. That may happen as early as this coming Tuesday, 1/7/03. Jeff would accompany Elicia up to Memphis. Debra, Tiffini and Jeff's parents would come to Greenville for just one night to take care of a few things, then head up to Memphis the next day. This will be the opportunity that some of you have been waiting for to physically do something to help Debra. I will be meeting Debra when she arrives to help with errands, laundry, packing, etc. If any of you ladies could give some time Tuesday during the afternoon and on into the evening to help with these things, let me know asap. We need to provide a meal for about 12-15 people, so I will need lots of help with this. Please let me know asap if you would be willing to make a dish or two.
Please continue to bring this dear, little child and her family before our loving Lord.
Psalms 139:17 - How precious also are thy thoughts unto me, O God! how great is the sum of them!
Received Friday, January 3, 2003 at 10:45 A.M.
HI. I know Lynn is out of town so trying to use her list to do an update on Elicia...hope it works. I am not quite the computer whiz that my hubby is. Anyway, Elicia kind of had a restless night due now to a Staff infection from the surgery. So that explains the fever. J&D are so frustrated with the staff there at Duke and are hoping to be moved to St. Jude on Monday if all goes well. Elicia has done a few things that have encouraged them. Last night she was sitting on the edge of the bed and she arched her back and swung her shoulders back and through her arms up to her head. So Debra laid her down and asked Elicia if her head hurt to close her eyes. Elicia closed her eyes and cried at that point. Also through this whole thing she has never fussed with Debra brushing her hair -- which was just not Elicia. Yesterday Debra brushed her hair and she fussed the whole time which Elicia use to do everyday prior to this. Debra said maybe she is pulling at straws at this point but she said she does see a difference. Elicia's school teacher will be there to see her tonight around 5! Debra said that she is loosing a lot of her hair and her arms are so small but her legs are still strong. At this point Debra needs strength that only God can give her! So that is my prayer for her today!
Also Debra spent the whole day reading to Elicia yesterday .. chapter books, frontline, etc. The whole time she read Elicia was quiet but as soon as she stopped Elicia began to complain again!
Received Wednesday, January 1, 2003 at 9:06 P.M.
Today the doc put in a new shunt/drain. They also drained pockets of fluid on the back of Elicia's head. They suspect that those pockets of fluid may have been causing some of Elicia's problems. The indicators show continued slow decline in the strength of the bac. men.
The doc took some spinal fluid to test for bac. men. The results will be back in a couple of days. Please pray that the men. is gone! It would not be a good thing if it still remains.
Elicia is not progressing and this has the doctors baffled. Pray that God will give them wisdom and enable them clearly understand and treat Elicia's problems.
Around 6:00pm tonight, Elicia woke up. When she did, she moved her head 3 times. This is the first deliberate movement that J & D have seen in almost 2 weeks. Debra was very encouraged!
Please continue to pray that J & D will get the rest they need.
Received Wednesday, January 1, 2003 at 12:21 P.M.
Please continue to pray daily.
Received Monday, December 30, 2002 at 10:05 P.M.
The dermatologist and the doc from Infectious Disease determined that the rash Elicia has developed is likely a reaction to one of the medications. They have changed the one that most commonly causes a rash. They are also doing a biopsy on the rash to try to better isolate it's cause.
Elicia's white counts are coming down. That is a good thing. It is a possible indication that the meningitis is being controlled. The Docs told J & D that this type of meningitis is fatal 90% of the time in children. As you can imagine, those are difficult words to hear. It will be a matter of time before they will know what long-term effects this will have on Elicia. D told me tonight that they would be at Duke for at least 7 more days. As eager as they have been to get Elicia to St. Jude, they agree with the docs that now is not the time.
Please continue to pray fervently that God will work a miracle in this sweet little child's body and a greater miracle in the hearts of those around her.
Received Saturday, December 28, 2002 at 10:53 P.M.
Elicia is in very serious condition right now. She has shown no significant sign of improvement today. The doctors have said, "this does not look good." There is concern that she may not make it through the night. Please pray through the night as God leads you. Debra is trying to rest now. I am to call her at 8:50am tomorrow morning.
When thinking of how Jeff and Debra have been keeping constant vigil over Elicia, the Lord brought to mind Psalm 121:1-4 "I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the Lord, which made heaven and earth. he will not suffer thy foot to be moved: he that keepeth thee will not slumber. Behold, he that keepeth Israel shall neither slumber nor sleep." Praise Him! He is watching and caring and in complete control of all of this! Pray that J & D will rest in this truth tonight.
Received Saturday, December 28, 2002 at 11:33 A.M.
Elicia had another rough night. In addition, they have determined that the cause of the fever is bacterial meningitis. They are not sure when Elicia contracted it, but suspect it was either during surgery or possibly due to a contaminated shunt/drain. The concern is that, if indeed she contracted it days ago, Elicia could experience deafness and CP as well as other problems. They have started her on anti-biotics and hope that will take care of the problem. They will do surgery around 1:30pm today to put in a new shunt, this time in the front, left top of Elicia's head. Some of the doctors feel that's where it should've been if the first place.
Although Elicia has been accepted at St. Jude, they will not be able to move her until she is stable. It is not likely that will happen by Tuesday. J & D are struggling with the "why" questions. J is quite angry at what he sees as gross incompetence on the part of the staff at Duke. D is just trying to continue to trust in the Lord and rest in His care in the face of, what seems to her, a never-ending list of complications. At this point, the doctors are not giving J & D a definitive idea of what they can expect for Elicia long-term. She could remain in this "state" or experience a small to great degree of recovery to her former self. The cancer is a separate issue, one that cannot be addressed until Elicia is stable and at St. Jude.
Please continue to pray for this dear family!
Received Friday, December 27, 2002 at 10:06 P.M.
Elicia had a rough night last night. She spent most of the night battling a fever (source unknown) and throwing up. Praise the Lord, she was able to rest the better part of the day. Debra was rejoicing that, because Elicia's day was so calm, Debra was able to read Matthew through Acts! With the hectic schedule they have there, she has not been able to read large portions of scripture at a time. What a blessing that was to her as she also read through notes she had written in the margins as Pastor Vaughn preached.
Today, the doctor at Duke signed the orders to have Elicia transferred to St. Jude. It seems that now it is just a matter of waiting for a bed to open up in Memphis. The transfer to St. Jude is scheduled for Tuesday. Elicia and one parent will be flown with a full medical staff. They are talking about having Jeff fly up with Elicia. Debra and Tiffini may come back to Greenville for a couple of days before making the trip up to Memphis. They will be in Memphis indefinitely. Tom and Crystal Giovanetti, Jeff's parents, have been with J & D the whole time. T & C will continue to go with J & D wherever Elicia goes. What a blessing T & C have been!
Today the doctor did a lumbar puncture. They are trying to determine if the cancer has spread. They also are trying to pin point the source of Elicia's fever.
They have not started chemo or radiation. They will do that once Elicia is stable and can move to St. Jude.
Please continue to pray for a miracle for Elicia and that the family will draw closer to the Lord.
Received Thursday, December 26, 2002 at 11:39 P.M.
On behalf of the Giovanetti family thank you so much for your continued prayers for the needs of this family! Debra was much encouraged this morning at the doctor's explanation of what is going on. First, the tumor that Elicia has is a "midual blastoma" (no idea of correct spelling). The tumor is growing, so the plan is to begin chemo and radiation asap. Right now, Elicia's brain has kind of "shut down." This is called "posterior fossa syndrome" (spelling?). The doctors say this is not that unusual. Often a child's body will respond this way when there has been trauma to the brain. Elicia has had brain surgery, a stroke and seizures.....all trauma to the brain. The doctors say that this is probably the body's way of healing. They can find nothing that would indicate that Elicia's "unresponsiveness" right now is going to be long-term.
There are two "teams" of doctors being consulted on Elicia's case. One team is at Duke, the other is at St. Jude's in Memphis. Duke is a little more conservative in their approach, St. Jude's, much more aggressive. Jude's recommended starting Elicia on "Prozac" (sp?) right away, thinking that it would bring Elicia out of this syndrome sooner. Duke doesn't normally do that, but they have agreed to do it for Elicia. They will start that today. Jude's wants to begin radiation immediately, regardless of Elicia's status with this syndrome, Duke wants to wait. So, as you can imagine, Debra and Jeff are faced with many complex decisions daily regarding Elicia's treatment. Jeff and Debra have made the decision to move Elicia to Jude's as soon as the transfer can be arranged. For Elicia to go to Jude's, the board has to approve "taking her on." That meeting will be this Friday morning, 12/27. The medical team at Jude's wants Elicia, so it seems as though it is just a formality to go through the board. Please be praying that the Lord will lead in this matter.
In the meantime, they are keeping Elicia comfortable, giving all of her systems a rest. Both sets of grandparents are now there in Durham helping with Tiffini and the practical demands of living.
Some of you have asked for an address to which you could send a note of encouragement. It is:
Duke University Medical Center
Durham, NC 27710
Have a blessed Christmas!!