Dear Friends & Family,
We have had many people tell us that they have trouble posting comments on our blog spot. This blog spot page was set up for us by my wonderful sister in law, Melissa Clark, when Julia was initially diagnosed. She set this up for us at a time when Jeff & I could not have possibly figured out how and when we certainly didn't have the time. Since so many of you have had trouble leaving comments, we decided to set up a CaringBridge page. I think it will be more user friendly for everyone. The web site is www.caringbridge.org. When you get to this site, go to "visit a website" & type in juliajohnson with no spaces. If you would like to leave a comment, you can sign in at the guestbook. We love to receive your comments. Thanks again to Melissa!

Hope to hear from you soon!

Sharon, Jeff, & Julia

Dalton

Julia's appointment went well last week. She got medicine in her spine & in her port. She continues to be so brave! Her blood counts have remained very good, which is good for starting school. (Let's all pray for NO SWINE FLU in our schools!!) After her appointment, we all went to Dalton for the rest of the weekend to visit my aunt & uncle. Julia got to swim in their pool, and we went to the aquarium in Chatanooga on Saturday. We had a nice visit. Julia's next appointment is this Monday morning (8/17). She will miss Brookwood's registration but should be at school on Tuesday morning. She is ready to see all her friends again! On Sunday, we are planning to go to an Atlanta Braves baseball game. Camp Sunshine has gotten donated tickets for children for that game, and they will have an opportunity to meet some players & have dinner there.

Thank you all for your sweet words of encouragement. They mean so much to us. The last comments brought tears to my eyes. I think all this travelling back & forth has gotten me a little weary, but with God's help we'll just keep on keeping on & doing what we have to do. We know that we are very blessed compared to others. We look forward to "Maintenance" in November.
Thanks again for all your prayers.
Love,
Sharon

8/4/09-Wednesday evening

Dear Friends,
Tomorrow we are heading back up to Atlanta for Julia's appointment Thursday morning @ 8:00. She will be receiving 2 drugs in her port (vincristine & methotrexate) & 1 drug in her spine (methotrexate). We have about another month in this phase, and then Julia will be in a treatment phase called "Delayed Intensification". This phase will be a hard phase for Julia. Please pray for her in the next few months, especially when she starts school. We want her to stay well & be able to be at school. This should end some time in November, then we will have monthly visits. Julia has felt really well lately & we are so thankful for her good feeling days. Thank you all for you prayers and for everyone who has been following our blog spot. We appreciate all your words of encouragement & the love you all have shown to us.
Love,
Sharon & Jeff

P.S. Julia says hi!! :)

Dear friends & family,
I got my long hairs cut off!! Small hairs were starting to grow in but we don't expect them to be there very long. Oh! My counts were as high as a normal persons!! So I went to get my teeth cleaned. I also went to Imagination Unlimited's camp today. Actually I went to my friend Kristen's house and she was going. And tonight I am going to a pampered chef party tonight!!
My cousin Pamela is coming Aug. 1!!!! School starts soon too!!
Love,
Julia

Macon

Dear friends & family,
A couple of Sundays ago I was baptized!! Oh and my first Thursday appointment went great! Our friend Bonnie Parish went with us she lives in Macon GA. After my appointment we went to Macon for a few days. That was fun! We went swimming and we went to a place called Lanes southern orchards. They grew corn, peaches, and pecans. Anyways we had a lot of fun.
Love,
Julia

Dear friends & family, 7-9-09
Last appointment went great and my blood counts were really high! My cousin Madison went with me. Oh! And I am getting baptized this Sunday!
Love,
Julia

With Julia's brevity, I'll follow up with a little more detail. We started what's called the "intermim maintenance" stage of her treatment on Monday, 7/6. Her counts had improved drastically since the previous Monday, so we were very pleased with that. With this stage of her treatment, we will now be going every 10 days to Atlanta for a 2 month period. Then we will be in "delayed intensification", which is a hard phase of treatment & will be closer to a weekly schedule for 2 months. Then we will be in "maintenance", which will be monthly hospital visits & oral chemo at home. As best we can tell, that's what her schedule looks like, and her treatment should end around July 2011. Her appetite is not very good these days, and she has lost some weight. Her hair is beginning to grow back in on top, but I don't think she will keep it very long. She's been quite achy this week, but has kept good spririts. Sometimes we feel very blessed with Julia's situation when we meet other families with children who are much sicker, but what she is going through is very hard on her little body. Please pray for her complete healing and for her to have no long term problems from all these strong medications. We have so many local friends suffering from some form of cancer right now and many new friends we've met in Atlanta. I'd like to list some of these people if you would like to also pray for them. I'm sure some of you are praying for mutual friends already. As always, thank you for your love, prayers, & words of encouragement.

Thomasville: Michelle Watt, Carmen Devane, Stephannie Murray,Susan Waters, Tommy Williams, Karen Crosby, Debi McHenry
Atlanta: Leland Erickson, Pyper Sellers (also from T'ville),Olivia, Irery, Patrick Brannen (Athens), Ward Wright (Albany), Aniah, Nurses & Doctors who deal with these children daily
Maggie & Stephanie (nurses in Nicaragua now on mission trip)
Families of Maris Barrett & Alexus Woods

I'm sure I've left someone out. I apologize. Thanks again.
Love, Sharon

Lots of fun stuff to say!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dear friends & family,
I had so much fun at camp!!!! My favorite thing at camp was gold panning. I found lots of jewels! And I liked the rock wall too. The first time I didn't make it to the top because my platelets were low so I only made it half way so I got some platelets after my first try on the rock wall. Then the next time I tried I made it to the top!!!!!!!! Oh! And when we went gold panning our cabin mom Mrs. Judy said ssshhh because their was a doe across the lake anjd it ended up about 5 feet from us. And after my parents picked me up we went back to the mountains for the weekend and went to Atlanta on Sunday. My appointment on Monday went FABULOUS!!!!!!!! In an odd way because I didn't get treatment but all of my counts were fine except for anc was low but anyways right before we even got into a room a nurse named Dianne whispered to daddy "Do you think Julia would want to go to a concert?" And before my dad could answer she asked me if I wanted to go to a KSM, DAVID ARCHILETTA, AND DEMI LAVATO CONCERT!!!!!!!! It started at 7:00 & ended at 9:50 IT WAS GREAT!!!!!!!!! We got home at 2:00 am. All in all it was a great week!

Dear friends & family ,
I went to church on Sunday with some of my family. I am going to get baptised soon because I accepted Jesus into my heart.
Love,
Julia
P.S. Camp Sunshine starts on SUNDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I will be there until Friday.

Bible school & camp

Dear friends & family, 6/9/09/
Today I went to Bible school and had lots of fun with my friends. Last clinic visit we only went to have blood work and the shots we have to give. Oh! And at the hospital they have a camp called Camp Sunshine. It lasts for a whole week and I'm going!! It is for people that have cancer or have been through cancer and when you are an adult you can help. If you want to learn more about Camp Sunshine just type in Camp Sunshine on the internet.
Love,
Julia.

Just saying HI!!

Dear friends & family,
I finally got my stitches out!!! At first I wasn't sure if it would hurt or not. It didn't hurt at all!! I guess my mom already told you how my blood counts were if you haven't read that post yet they were fabulous!!! Hope you have a great rest of the week!!
Love,
Julia

6/2/09 HOME AGAIN

Dear Friends & Family,
Yesterday's appointment went very well. We were there all day, because Julia had to receive about 7 hours of fluids before & after one of the chemo drugs. Julia's neutrophil count was up to 1,580 (normal range is 1490 - 7970). Woo Hoo!!!! All of her blood counts were within normal ranges except her white blood count was 4.06 (normal range 4.5-13.5) and some of her blood work is indicating some high ranges with her liver. The doctor said it is common to see these liver components run high. They usually return to normal after treatment, but he did say that chicken pox could also affect the liver which was another reason to be watching these very closely. But, speaking of chicken pox, her biopsy results finally came back yesterday afternoon before we left. Julia did not have chicken pox!! All that we learned is that her bumps were a reaction to something!?! What, we do not know. The doctor said that there is a silver lining to this black cloud. Since Julia had not received any chemo drugs since 5/11, we had a chance to see her blone marrow go to work. She seems to have healthy marrow!!! A big praise!! This also allowed her blood counts to build up higher before she starts getting hit hard again with more chemo drugs which lower blood counts. Chemo drugs are good & bad at the same time. Sometimes it's hard allowing these powerful drugs to be given to your child, worrying about possibe side effects even into her future, but knowing that they are needed to give her the best cure possible. We just have to have faith that God has her in His hands.
.....All in all, it was a good day.
Love,
Sharon, Jeff, & Julia
P.S. Jeff has to give Julia chemo shots Tues, Wed, Thurs. and again next week. These shots are under the skin, but it hurts when the medicine goes in. Please pray for Jeff. He hates giving them to her, & Julia is not always so brave to receive them.

Update

Dear friends & family,
We are heading back up to Atlanta tomorrow. I am going to beauty and the beast tonight with my senior buddy Margret Singletary. My good friend Kristen Mulford came over to my house today. That was fun. Anyway last time we went up to Atlanta the Dr. said my blood counts were too low to do the procedur. They need to be 750 but they were 740. My sugar and protein were low too. Also on Monday I get my biopsy stitches taken out. I hope my blood counts will be high enough!!
Love,
Julia.

5/24-SUNDAY MORNING STILL IN ATLANTA

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

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

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

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

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 & 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

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

WAITING FOR HOSPITAL ROOM IN ATLANTA

5/8/09 UPDATE
We found out this afternoon that our doctor in Atlanta does not want Julia to be dismissed from the hospital until her blood counts start to go back up. As of this afternoon, they did not have a bed available at Egleston. Their plans are as soon as they have a bed available, they are coming here to pick up Julia in one of their ambulances & take her back to Atlanta. She will probably have to have a platelet transfusion in the next day or so. Our hope is that she can get to Atlanta before that has to be done. They still want her to have her normal treatment appointment Monday morning, since neither of the drugs she'll receive Monday should affect her blood counts. Thank you so much for your prayers. Our next update will more than likely be while we're in Atlanta.
Love,
Sharon & Jeff