Julia's Updates

Oct 25th, 2003 Day 365 Happy One Year post BMT for Julia!!!! Yes, what a year it has been..Thank you Lord!! Of course we had a celebration and we had so much to be thankful for, we just returned from Julia's Make A Wish from Sea World in sunny San Diego, California. We had a great time visiting Sea World, Knotts Berry Farm, Six Flags, San Diego Zoo and Wildlife Park. The flight was good, and everything went very smoothly. Julia's one year visit went well they did an echo, chest X-rays, blood tests and everything looked good. So she doesn't have to visit until February 2004!!!

August 14th, Day 293 Dr Godder reduced Julia's daily pills finally. She only takes one pill a day, except Tues and Weds when she takes an additional morning and an evening pill. The doctors say she is doing well and is ready to get going to First grade!!

April 30th, Day 187 Over six months!!! We just got back from Disney World (see Alicia's schedule) and she is doing great. Dr Godder is starting to reduce her medicines on a weekly schedule. Blood work looks good and she is still on a monthly checkup in Portland. She has been going to Kindergarten at Buckingham with her sisters and enjoys school.

Mar 8th, Day 134 Julia's Doctor visit went well, she had her Hickman Catheter removed at Doernbechers. She still has a cough and her nose still runs off and on. Her hair is growing back very quickly. There is a picture on the main page of her and Alicia from just a few days ago. Next scheduled doctor visit is March 24th at Doernbechers.

Jan 27th, Day 94 Julia had her monthly checkup today in Portland. She had a bone marrow aspiration. Basically the doctors put her to sleep for less than 10 minutes and took a sample of her marrow out of her hip bone. Similarly to Vanesa's surgery, but a much smaller hole and sample was taken. Julia also has black hair that is growing in very rapidly, it shouldn't take long for her head to be covered.

Jan 4th, 2003-- Day 71 Sorry about the lack of updates, but no news is good news. Julia had a wonderful Christmas, she did get the flu that is going around along with her other sisters. It took a few days longer to run its course but she is better now. She has had a couple of doctor visits at Doernbechers and everything is doing well her numbers are doing very well. Her next Portland visit is at the end of January.

Nov 21st, -- Day 27 Well the first little hiccup today, there was traces of blood in Julia's urine. The Doctors are watching it closely, most likely it is some type of bladder or urinary track infection. She is taking other antibiotics and lots of extra fluids. If it gets any worse she may have to go back into the hospital for a few days. Let's hope and pray for the best.

Nov 18th, -- Day 24 Julia's white blood count were at 2900 and her platelets was at 190 this morning. Dr Godder said that Julia may go home next monday. She will need to have weekly checkups after that.

Nov 15th, --Day 21 White blood count 3000 and Julia's platelets were at 140. Right on track!

Nov 13th, -- Day 19 Doctor checkup day. Platelets are holding in the 50's and the cough is almost gone, she is still being a pill about taking her pills. She only takes 8 pills a day compared to Alicia's 18!

Nov 11th, -- Day 17 There is a little bit of skin rash that possibly could be GVH (Graph Versus Host) on her head, but that is expected. She is coughing and has a runny nose, so at today's appointment the docotrs gave her a prescription of antibiotics for it.

Nov 8th, -- Day 14 Julia was able to get out of the hospital today, they gave her more platelets just to beef her up for the weekend. They aren't able to get into the Ronald McDonald house, so they are staying at a local hotel with a kitchen in it.

Nov 6th, -- Day 12 White blood count was 3000, she was able to leave her room and go to school. The doctors are preparing for her to get out of the hospital this Friday, like having her take her medicines orally.

Nov 5th, -- Day 11 Julia received another half unit of platelets. And she is feeling much better today. White blood count went from 500 yesterday to 1000 this morning!!! Very GOOD NEWS!!! The doctors are talking about letting them go to the Ronald McDonald house already this weekend, 14 days after transplant a MIRACLE it is!

Nov 3rd, -- Day 9 Platelets went down to 13 and she is due to be given more, the doctors are not ready to freak out about the loss. The doctors said that platelets are the last thing to recover from the chemo. White blood count is up from 200 to 300 and that is good news! She is still tired most of the time and not eating much at all.

Nov 1st, -- Day 7 One week has already gone by since transplant!!! Thank you LORD! Last night Julia's platelet count was 53 and this morning they were at 59. Which means that her body didn't immediately reject the platelet infusion from yesterday, that is a good sign..

Oct 31st, -- Day 6 Julia's Platelet count was down to 10 today, so the doctors started an infusion of platelets. So we will quickly find out if her body is going to fight them off, due to her antibodies. Keep up the prayer for this big hurdle that her body doesn't eat the new platelets.

Oct 30th, -- Day 5 There are only a few strands of hair left, just look at the pictures! When it goes it goes fast. Didn't eat anything today and her stomach is very upset. Still her spirits are up, which helps out a lot.

Oct 28th, -- Day 3 Julia has been doing really well since transplant, the doctors don't expect any results on what the bone marrow is doing for up to 10 days after transplant. Her hair is starting to fall out and could come out rather quickly. Appetite is still doing well and hardly any nausea for the past four days.

Oct 25th, -- Day 0 Julia received her new bone marrow from Vanesa today, starting at 1pm and took over 3 hours to finish. She had high blood pressure through out the evening to the concern of the doctors. She has continued to eat off and on and has kept a positive attitude. Her white blood count dropped very similarly to Alicia's along with her neutrophil count, so that was normal. She has been confined to her room for the past few days, due to the lack of immune system functions.

Oct 16th, -- First day of chemo. Julia will receive a dose of chemo every six hours starting at 6am today thru the next four days. After that she will receive a couple of different types of chemo for four more days. She went to the school at the hospital for 1 1/2 hours and didn't want to leave. So hopefully she continues to feel better for as long as she can.

Oct 7th, -- Stem cell extraction is a process that is similar to Dialysis. Where is the blood is pumped from the body and the stem cells are collected in a bag and then the blood is returned back to the body. Julia is feeling a little tired, I can't imagine why? But otherwise doing very well. Her chemotherapy is starting tomorrow, they will also know early in the morning if they need more stem cells from her.

Oct 3rd, -- Today starts a once a day medicine that is given thru her Hickman for the next five days. It is given for the stem cell extraction that is scheduled for Monday Oct 7th.

Oct 1st, -- Julia had her Hickman surgery today. The doctors had good success with Nova Seven on the other little boy that had Glanzmann, but not such success with Alicia. They decided to use it on her prior to the surgery and there was very little bleeding AMEN!!!

Sept 27th, -- Julia's Bone Marrow Transplant is approved by insurance company today. So her Hickman Catheter is schedule for Tues Oct 1st at Doernbechers Children Hospital. Approximate harvest day Oct 18th for Vanesa's bone marrow, chemotherapy treatment should start around the 6th of October.

Sept 19-20th, -- A trip up to Doernbechers to met with the Dr Godder for the final exam for Julia and Vanesa. Both had blood taken 6-8 vials each, Julia also had a Cat scan, Lung test, and both of them had Chest X-rays. We believe that Julia will have stem cells taken out of her before her chemo is started. Her anti-bodies are still concerning Dr Godder and she wants to be extra careful that with the stem cells from herself that it gives them a backup plan.

August 22nd, --Checkup day for Alicia and some prep work for Julia and Vanesa, she is Bone Marrow Donor for Julia. So they all had Band-Aids on there arms, it was certainly the sight. Dr Godder had heard from Dr Nugent and there didn't seem to be enough antibodies to worry about. So tentative harvest date for Julia has been set...October 11th 2002!!

August 5th, --Dr Godder had a sample of Julia's blood sent to Dr Nugent at CHOC to analyze for antibodies.

July 29th, 2002 --We had a appointment with Dr Godder to discuss moving up Julia's estimated transplant date from spring of 2003 to later this fall. Julia has been in three times over the last two weeks with bloody noses, similarly to Alicia's scenario. She is concerned about some antibodies that showed up in past results from Julia's blood. If they are of concern they may need to be destroyed before the transplant can take place.