We are still in Atlanta, but I feel pretty certain they will let us go home today on oral anti-viral drugs. Julia's bumps are less red today than yesterday. They have seemed a little better each day but sometimes still itchy. Her creatinine was a little elevated yesterday but down some today, which is probably a result of the anti-viral medicine. They will continue to monitor that. Julia has no appetite, which is probably a result of chemo drugs.
Hopefully we will be home later this afternoon. As always, thank you for your prayers & concern.
Love,
Sharon, Jeff, & Julia
Sunday, May 24, 2009
Friday, May 22, 2009
BACK IN THE HOSPITAL AGAIN!!!
5/22/09-Friday p.m.
Yesterday was not a good day!! My mother & I came up for Julia's clinic appointment on Thursday. When we got in the room the nurses were asking how our week had been and any medicines Julia had been on. Well, the past few days at home, we had noticed a few "bug bites" on Julia's arms, no big deal, just a few bites. Of course we were wondering what had bitten her, since she had not been outside hardly at all. We started suspecting our dog, Stanley, & wondered if he had fleas, which he never has!! Jeff & I did not have any bites & we saw no fleas on the dog. Well, when we got to the clinic, I mentioned these bites. That was like pressing an alert button with these nurses!!! They immediately assumed chicken pox, which had never crossed our minds. We felt so bad, because chicken pox is a major concern for children with leukemia, and we had been out in the waiting room with other children and had stayed at the Ronald McDonald House the night before. They got the doctor in the room quickly & he looked at Julia's bumps. He did not think the bumps looked like typical chicken pox, but since Julia had chicken pox vaccines, he said it could be possible for her symptoms to present differently. Next, they got 3 doctors from infectious disease alll cloaked & masked up to look at Julia. They were not certain either, so they said they would need to get a sample of some of the bumps (like a skin scrape for a dog). Meanwhile, I had called Jeff, told him to get Stanley to the vet immediately, have him skin scraped for any possible mites, which he had none. Jeff then got a ride to Atlanta with some friends. Julia got very upset at the sight of these new doctors & very frightened about the "skin scrape", so they had to give her some concious sedation for that procedure. After spending about 5 1/2 hours in that exam room, they finally moved us into a hospital room for Julia to receive I.V. anti-viral medicines. The concern with chicken pox is that it is a rapidly spreading respiratory virus that can quickly move into the lungs & cause pneumonia. They did a chest x-ray, which was o.k. and the skin sample turned up negative for the chicken pox virus. But they still want to treat her as if it could be chicken pox. We have since had many dermatologists look at her & no one seems to know what it might be. One of the infectious disease doctors came & took pictures of Julia's bumps since most doctors these days don't ever see chicken pox anymore. I told her that should be the only time she is ever photographed topless!! Today, they decided that they should do a biopsy of a couple of the bumps to see if they could learn anything that way. It will take a few days for those results to come back. Meanwhile, we continue on I.V. antiviral and maybe go home tomorrow or Sunday on oral antiviral meds. Interestingly, an older gentleman dermatologist came in & looked at her briefly today and asked if we had fleas in our house?!!
On the bright side, Julia's blood counts have come up a lot and they have postponed her next chemo treatment again until next Thursday. Hopefully, our next blog posting will come from home. Thank you for your many prayers.
Love,
Sharon, Jeff, & Julia
Yesterday was not a good day!! My mother & I came up for Julia's clinic appointment on Thursday. When we got in the room the nurses were asking how our week had been and any medicines Julia had been on. Well, the past few days at home, we had noticed a few "bug bites" on Julia's arms, no big deal, just a few bites. Of course we were wondering what had bitten her, since she had not been outside hardly at all. We started suspecting our dog, Stanley, & wondered if he had fleas, which he never has!! Jeff & I did not have any bites & we saw no fleas on the dog. Well, when we got to the clinic, I mentioned these bites. That was like pressing an alert button with these nurses!!! They immediately assumed chicken pox, which had never crossed our minds. We felt so bad, because chicken pox is a major concern for children with leukemia, and we had been out in the waiting room with other children and had stayed at the Ronald McDonald House the night before. They got the doctor in the room quickly & he looked at Julia's bumps. He did not think the bumps looked like typical chicken pox, but since Julia had chicken pox vaccines, he said it could be possible for her symptoms to present differently. Next, they got 3 doctors from infectious disease alll cloaked & masked up to look at Julia. They were not certain either, so they said they would need to get a sample of some of the bumps (like a skin scrape for a dog). Meanwhile, I had called Jeff, told him to get Stanley to the vet immediately, have him skin scraped for any possible mites, which he had none. Jeff then got a ride to Atlanta with some friends. Julia got very upset at the sight of these new doctors & very frightened about the "skin scrape", so they had to give her some concious sedation for that procedure. After spending about 5 1/2 hours in that exam room, they finally moved us into a hospital room for Julia to receive I.V. anti-viral medicines. The concern with chicken pox is that it is a rapidly spreading respiratory virus that can quickly move into the lungs & cause pneumonia. They did a chest x-ray, which was o.k. and the skin sample turned up negative for the chicken pox virus. But they still want to treat her as if it could be chicken pox. We have since had many dermatologists look at her & no one seems to know what it might be. One of the infectious disease doctors came & took pictures of Julia's bumps since most doctors these days don't ever see chicken pox anymore. I told her that should be the only time she is ever photographed topless!! Today, they decided that they should do a biopsy of a couple of the bumps to see if they could learn anything that way. It will take a few days for those results to come back. Meanwhile, we continue on I.V. antiviral and maybe go home tomorrow or Sunday on oral antiviral meds. Interestingly, an older gentleman dermatologist came in & looked at her briefly today and asked if we had fleas in our house?!!
On the bright side, Julia's blood counts have come up a lot and they have postponed her next chemo treatment again until next Thursday. Hopefully, our next blog posting will come from home. Thank you for your many prayers.
Love,
Sharon, Jeff, & Julia
Friday, May 15, 2009
HOME SWEET HOME!!!
Dear friends,
We are home!!! Julia's neutrophil count was up to 100 this morning, so they said we could come home. She is still very neutropenic, which means she could very easily catch something. The doctors have postponed our normal Monday clinic appointment until next Thursday, so that her blood counts will have more time to continue to rise. We are very glad to be home in our own beds!!!
Thanks for your prayers!
Love,
Sharon, Jeff, & Julia
We are home!!! Julia's neutrophil count was up to 100 this morning, so they said we could come home. She is still very neutropenic, which means she could very easily catch something. The doctors have postponed our normal Monday clinic appointment until next Thursday, so that her blood counts will have more time to continue to rise. We are very glad to be home in our own beds!!!
Thanks for your prayers!
Love,
Sharon, Jeff, & Julia
Thursday, May 14, 2009
5/14-Thursday p.m.
Julia's neutrophil count went up to 80 today from 10 yesterday, so we had some improvement. She went to school again today, game room this afternoon, & Bingo tonight...busy day!! Her white blood count basically stayed the same. The doctors want to see a couple of days of upward swings in her blood counts before she can come home. Hope to be home soon!!
Love,
Sharon & Julia
Love,
Sharon & Julia
Wednesday, May 13, 2009
5/13/09-FROM ATLANTA
Dear friends,
Julia's bloods counts are still very low. Her neutrophil count is only 10 as of this morning, so she cannot go home until those counts start to rise. She had a good day. She went to the school here from 10:00-12:00 and worked on some school work we brought with us & some that the school faxed up here for her. It's amazing how busy they keep children here. She beat me at a game of battle ship, did a colorful sand art project, played video games...a day goes by so quickly. I guess the hard part of our day was when they had to re-access her port. They took the port access out this morning, because it had been there for a week. She was able to be disconnected from her I.V. pole for a couple of hours while she went to school. But when they had to re-access it, she got very upset & said it hurt. She fought it pretty bad, which was very upsetting to see. The most we could get out of her was that her skin hurt at the sight. After they finished she was fine. ???
I just met a new family whose daughter was diagnosed yesterday with A.L.L. They were desperate for information. I was actually able to help her with info along with my friend, Sarah, who has been here for 5-6 months. I remember so well how we felt 2 months ago today, on March, Friday, the 13th. Have a good evening, and please pray for white blood cells for Julia & so many other children on this floor that desperately need them.
Love,
Sharon
Julia's bloods counts are still very low. Her neutrophil count is only 10 as of this morning, so she cannot go home until those counts start to rise. She had a good day. She went to the school here from 10:00-12:00 and worked on some school work we brought with us & some that the school faxed up here for her. It's amazing how busy they keep children here. She beat me at a game of battle ship, did a colorful sand art project, played video games...a day goes by so quickly. I guess the hard part of our day was when they had to re-access her port. They took the port access out this morning, because it had been there for a week. She was able to be disconnected from her I.V. pole for a couple of hours while she went to school. But when they had to re-access it, she got very upset & said it hurt. She fought it pretty bad, which was very upsetting to see. The most we could get out of her was that her skin hurt at the sight. After they finished she was fine. ???
I just met a new family whose daughter was diagnosed yesterday with A.L.L. They were desperate for information. I was actually able to help her with info along with my friend, Sarah, who has been here for 5-6 months. I remember so well how we felt 2 months ago today, on March, Friday, the 13th. Have a good evening, and please pray for white blood cells for Julia & so many other children on this floor that desperately need them.
Love,
Sharon
Tuesday, May 12, 2009
JULIA & SHARON-FROM ATLANTA
5/12/09
Dear friends,
Julia's blood counts continue to remain low, so we are waiting for those counts to start to increase. Her neutrophil count ( part of white blood cells that fights infections) is only 30. I believe the low end of a normal range is 1,400, but I don't have that paper work in front of me at the moment. Surprisingly there are children on this hospital floor right now that have zero neutrophils. We encounter so many children and their families that are in a lot worse shape than we are. It's such an eye opening experience to learn about these children. The 3rd floor at this hospital is full!!! The wing where we are is very busy, many times with young kids on their tricycles with their masks on, sometimes with parents behind them pushing their child's I.V. pole. It's something to see!! Don't ever take your children's health for granted. Because Julia's blood counts decreased yet again this morning, she had another blood transfusion this afternoon. This is her 3rd transfusion overall. It's strange that receiving a transfusion of someone else's blood has become something that we don't seem to worry about so much anymore. The doctors say that she cannot go home until they see those counts start to increase again. Julia is also being treated with an inhaler because of her croupy cough. It could be that this dip in blood counts could drag along because of this congestion/cough. She also has continued to have high blood pressure & a high pulse rate, which is concerning me a whole lot more that the doctors!
Please pray that this blood pressure and pulse rate will level out and that this cough will go away, and please pray for white blood cells!!
I'm sorry that I have been rambling on & on in this update. In closing, I will share with you all that God has been so good to give us the strength that we have needed. I know that He is with us all the time. He makes procedures like blood transplants be "OK"... watching nurses put drugs into a port in your child's blood stream and drawing blood back out "OK"...watching fluid being taken from your child's spine & having drugs put into her spine "OK"... I still feel like at times that this is all a big nightmare & that I will soon wake up. I never would have thought that I would have the strenth needed to handle all of this, but with HIS help I am handling it. Please continue to pray for strength & guidance for Jeff & me and for Julia's continued healing.
Love,
Sharon
Dear friends,
Julia's blood counts continue to remain low, so we are waiting for those counts to start to increase. Her neutrophil count ( part of white blood cells that fights infections) is only 30. I believe the low end of a normal range is 1,400, but I don't have that paper work in front of me at the moment. Surprisingly there are children on this hospital floor right now that have zero neutrophils. We encounter so many children and their families that are in a lot worse shape than we are. It's such an eye opening experience to learn about these children. The 3rd floor at this hospital is full!!! The wing where we are is very busy, many times with young kids on their tricycles with their masks on, sometimes with parents behind them pushing their child's I.V. pole. It's something to see!! Don't ever take your children's health for granted. Because Julia's blood counts decreased yet again this morning, she had another blood transfusion this afternoon. This is her 3rd transfusion overall. It's strange that receiving a transfusion of someone else's blood has become something that we don't seem to worry about so much anymore. The doctors say that she cannot go home until they see those counts start to increase again. Julia is also being treated with an inhaler because of her croupy cough. It could be that this dip in blood counts could drag along because of this congestion/cough. She also has continued to have high blood pressure & a high pulse rate, which is concerning me a whole lot more that the doctors!
Please pray that this blood pressure and pulse rate will level out and that this cough will go away, and please pray for white blood cells!!
I'm sorry that I have been rambling on & on in this update. In closing, I will share with you all that God has been so good to give us the strength that we have needed. I know that He is with us all the time. He makes procedures like blood transplants be "OK"... watching nurses put drugs into a port in your child's blood stream and drawing blood back out "OK"...watching fluid being taken from your child's spine & having drugs put into her spine "OK"... I still feel like at times that this is all a big nightmare & that I will soon wake up. I never would have thought that I would have the strenth needed to handle all of this, but with HIS help I am handling it. Please continue to pray for strength & guidance for Jeff & me and for Julia's continued healing.
Love,
Sharon
Sunday, May 10, 2009
FIRST AIRPLANE RIDE FOR JULIA
5/10-Sunday a.m.
Dear friends,
Julia had her first ambulance & airplane trips!! We found out Saturday afternoon that the hospital in Atlanta was planning to life flight her to Atlanta. We thought helicopter, but they flew a plane to our airport in T'ville. They transported her by ambulance from Archbold to the airport, then by plane to Atlanta, then ambulance again to Egleston. WOW!!! William, Melissa, and children, my parents, Dawn, Chris, Kristen, & Catherine Mulford came to see us off! I think at this point all they plan to do is continue her course of i.v. antibiotics, do another blood culture, and if no other fever, they we will have our appointment in the morning as planned. They also need to see that her blood counts are coming back up. They may release us shortly after that, but I'm not sure at this point. Julia's blood pressure has been running quite high, and we will be addressing that more this morning. Hopefully, our next blog post will be from home. :)
As always, thank you for your continued prayers.
Love,
Sharon
Dear friends,
Julia had her first ambulance & airplane trips!! We found out Saturday afternoon that the hospital in Atlanta was planning to life flight her to Atlanta. We thought helicopter, but they flew a plane to our airport in T'ville. They transported her by ambulance from Archbold to the airport, then by plane to Atlanta, then ambulance again to Egleston. WOW!!! William, Melissa, and children, my parents, Dawn, Chris, Kristen, & Catherine Mulford came to see us off! I think at this point all they plan to do is continue her course of i.v. antibiotics, do another blood culture, and if no other fever, they we will have our appointment in the morning as planned. They also need to see that her blood counts are coming back up. They may release us shortly after that, but I'm not sure at this point. Julia's blood pressure has been running quite high, and we will be addressing that more this morning. Hopefully, our next blog post will be from home. :)
As always, thank you for your continued prayers.
Love,
Sharon
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