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.

Alicia's Pictures

Alicia's Updates

(This is a time line that I kept updates on Alicia's progress from start to finish plus a few more years after her Bone Marrow Transplant)

Oct 23, 2003 Just returned from Make A Wish trip for Julia and had Alicia's doctor visit. We met with a dermatologist for Alicia's hair, and the doctor believed that her hair was making progress and was not ready to do anything drastic to help stimulate growth. We are to return in June of 2004 to see how the progress is going then. Everthing else is going well for her and the doctors are pleased with her progress. The research papers are complete from Dr Godder, not sure when we get to see them.

August 14th, 2003 Dr Godder is starting her research papers on Glanzmann and Bone Marrow Transplants, she is not sure the time line but will make sure we get one, hopefully we can post it here somehow for everybody to read. It will probably be full of medical terms we don't understand, but that is okay.

April 30th, 2003 We just got home from Alicia's Make A Wish vacation to Disney World in Orlando, Florida. It was a great trip for our family. Thank you very much Make A Wish. Please donate to them via our links page.

March 8th, 2003 Alicia is doing well she has not heard from her donor, even though it is over a year. Maybe we can find out his name on Julia's next doctor visit March 24th. Alicia continues to have a her runny nose, which she has had for the last two months. The doctors want her to gain more weight and she hasn't grown any taller, so they continue to monitor her. They want to make sure she hasn't stopped growing.

Feb 6th, 2003 One year!! We had a Happy Birthday Party for her at school and she choose to go out with our family for a celebration.

Jan 27th, Day 355 Alicia had her 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. The doctors will then match it up to the donors to make sure that it is a duplicate, basically it is the final statement for any medical records that need to be taken care of. Ten more days till a year and the donor's name can be release to us and likewise for ours.

Jan 4th, 2003-- Alicia is doing well in school and loves it. She had visits to Portland every six weeks or so, and everything is doing well. She will be off all her medicine at the end of the month. The donor is very anxious to meet her, we can official have his name at one year, which is Feb 6th, 2003. Hope you had a happy holiday, we sure did!!

Sept 21st, -- Day 224 Sixth Annual Celebration of Courage was held at the World Trade Center in Portland, Oregon. Alicia was one of the 25 heroes of Oregon nominated by some of Doernbechers doctors and nurses. She had a great time and wasn't even shy about meeting Governor Kitzhaber or Senator Gordon Smith.

Sept 13th, -- Day 216 Alicia lost two teeth today!

Sept 3rd, -- Day 206 Alicia's first day of First Grade!! She is so excited, we are so happy for her. She is such a trooper..Check out her new update in pictures.

July 29th, -- Day 170 Alicia is enjoying the summer swimming and doing normal kid things. She has fell off her bike and skinned her knee, but it stopped bleeding right away. I didn't put pressure on it just to watch those new platelets work there stuff!!! AMEN. We were able to reduce one of her pills in the evening and then just yesterday we reduced it in the morning also.

July 12th, -- Day 153 Dr Godder was not available yesterday, so we are not sure if they are going to reduce her medications. The surgery to remove the Hickman was quick and painless, only took 7 or so minutes. They were able to use a quick to sleep and quick to awake drug so her recovery time was good.

July 10th, -- Day 151 Portland visit tomorrow 11am, normal checkup, as in blood testing and overall checkup up. At 3pm she has her scheduled Hickman Catheter removed, it is a in and out procedure, so I PRAY that is true. And hopefully they can reduce some of her daily pill intake!! She is being a trooper taking them every day twice a day.

June 13th, --Day 124 Portland visit went well the Doctors are going to remove the Hickman Catheter on July 11 if Alicia wants to have it removed. She would just have to have her blood drawn from her arm instead. Her medicines were reduced 2.5mg, so not to much.

June 6th, -- Day 117 Alicia had her first spill on the concrete, scraped her knee, and the bleeding stopped with a Band-Aid!!

May 23rd, --Day 105 Portland Dr visit, Dr Godder felt that the she would not alter the medications this visit and discussed removing the Hickman sometime in the near future.

May 15th, --Day 97 She doesn't have a doctors visit this week, last weeks visit on Thursday, the doctors had to put her to sleep to examine her sinuses. They took a sample and found nothing more than a normal infection. They continued her antibiotics for another week.

May 2nd, --Day 85 Alicia's doctor visit in Portland today showed she had a sinus infection. So they had to stay the night in Portland so they can examine her tomorrow morning. A overnight stay not at all planned!! At least they get to see a different room at the Ronald McDonald house.

April 27th, --Day 80 Lisa and Alicia returned home yesterday. Dr Godder believes she may not have to come back every week for her "iv-ig". So they may only have doctor visits every two weeks instead, but it is up to the results from last Thursday's visit. Which is mostly likely not going to be known until first part of this coming week.

April 15th, --Day 68 News Conference held at Doernbechers, good turn out 4 TV stations and several newspaper reporters. Dr Godder was able to be there also. She said that they will continue to lessen some of the medicines that Alicia is on, including the one that suppresses the immune system. But it also helps prevent GVH so it is possible she could still show some signs of GVH in a spotty rash, but much less of a case than earlier. Alicia's eyebrows are really dark in color and full!! Lot more hair on top also, I counted past 20 in just a square inch spot.

April 8th, --Day 61 Lisa and Alicia came home for weekend and are ready to stay! The doctors do only need to have once a week visits on Thursdays. The hair has about doubled on top of her head and is twice as long as a week ago. Possibly a month left but may only be two weeks. Lisa doesn't want to rush anything we don't need a relapse!

April 2nd, --Day 54 There appears to be some curly hair starting to crop up on Alicia's head. The Doctors are going to have her come in only once a week starting next week. Everything doing very well.

Mar 18th, --Day 40 There was no infection found in test results, next is to watch kidneys. The doctors are keeping her on liquid fluids at night to help flush out medicines faster. Sunburn look is almost gone, but still flaky kid.

Mar 15th, --Day 37 Alicia has been having some lower stomach pains and back pain. This morning there was traces of blood in her urine. Lisa took her in right away at their request, they think it might be a bladder infection or the bladder lining might be upset about all the drugs she is taking.

Mar 11th, --Day 33 Doing well itching from GVH rash is getting less and less. Still red is some parts, like hands and feet, but overall doing well. Good appetite, not vomiting, no new hair growth visible. Dry flaky skin on her face, similar to sunburn peeling. White cell count 6100 and platelets 195.

Mar 6th, --Day 28 White cell count 5400 and platelets 174. A sunburn looking rash on her feet, hands and back is still evident. The doctors have added two more steroids to help the rash. She is no longer on any liquid diet as of Mar 4th.

Mar 2nd, --Day 24 Her appetite is rapidly increasing and hopefully in a few days she can be taken off liquid diet through iv. GVH rash seems to be clearing up and her spirits are up also.

Mar 1st, --Day 23 A heat looking rash today ended up being a mild case of Graph verses Host disease (GVH), but the doctors gave her some medicine, it should clear up quickly. Alicia was able to get out of the hospital late this evening. She is staying at the Ronald McDonald House in the area. She will continue to have testing done at Doernbechers every other day or so.

Feb 26th, --Day 20 Alicia's platelets reached 67 today and white cell count was up to 6700. She is starting to take some medications orally, hoping to get out of hospital by this weekend.

Feb 24th, -- Day 18 White cell count still holding at 6100 and platelets are at 34. She decided to eat a little bit, but still have some mucus when waking up in the morning. Which is making her gag and throw up. Took a bath to help sores on her bottom, they seem to be getting better each day.

Feb 23rd, --Day 17 White blood count is at 6100 and platelets are at 32! That is pretty much on her own also, the medicine to help make white blood cells has not been given to her for a few days. The doctors are going to give a dose of the medicine to help keep the platelets from being rejected by her body tomorrow and then try to limit it to once a week to see if her body keeps the new platelets. Still not eating much today.

Feb 18th, --Day 12 White blood count started at 1200 this morning and around 8pm it was up to 2200. White blood count is part of the immune system that shows that cells are developing quickly. Platelets are still low 17, but the medicine that helps fight of antibodies is still being administered. Her stomach was still upset today, so she didn't eat anything again.

Feb 16th, --Day 10 Good spirits today. Platelet count went up to 60 then dropped back to 25 later. Dr Godder said that was very good news. White cell count was 300 this morning and 8 hours later it was already 400. They told me I might get to get out of the hospital if it went to 500 and stayed for three days! Keep up the prayers.

Feb 13th, --Day 7 The nose bleed has stopped. But gums are bleeding now and trying to stop it is the same as the nose bleed. Platelets and hope it stops. She is feeling pretty good today and made some valentines. Still not eating much food.

Feb 12th, --Day 6 Nose bleed continuos today, it slows but never stops. Her body has built up antibodies to other platelets, therefore clotting doesn't happen. They are going to try something to stop the antibodies so they can get the nose to stop bleeding. They also called in someone to give blood that has her same platelet type to give blood for her. Her body should except those platelets with any problems. A clotting factor was giving to her today.

Feb 9th, --Day 3 Alicia is feeling pretty tired today, and she wasn't able to keep much food down. A nose bleed caused some of the irritation to the stomach. Her hair is starting to come out in small amounts.

Feb 6th, --Day 0 At 9:45am the donor's bone marrow was started into Alicia's central line and just short of two hours the transfusion was complete. There was only a slight fever during that time. A nurse was present in the room during the transplant to monitor her breathing, oxygen in the blood, blood pressure and temperature. Four doctors and two nurses were present. She is reacting fine so far and has still maintained her appetite. A nose bleed has been on going since 2pm yesterday, so we are trying the Afrin up the nose trick.

Feb 5th, --Day of Harvesting! Well we thought she would also get her transplant today, but it will not arrive at Doernbechers in a timely manner for processing. So 10am tomorrow morning is the ETA for transplant.

Jan 30th, --Alicia is on day number four of chemo. Every six hours she get a dose, that takes two hours to be put in. It hangs on her iv pole and is pumped from a big syringe. She is getting tired quicker each day, that is to be expected. Two of the Portland Trailblazers came to see her today. She has two different types of chemo until Sunday.

Jan 25th, -- I am headed up with my father and the other girls to stay thru the weekend of Feb 2nd so hopefully I can still update the site!

Jan 23rd, --Kelly Brady from OHSU called she is part of the BMT coordinating team and wants to have Alicia to be there by 11am! The doctors, including DR Nugent, have decided to use no radiation treatment, but three typesy of chemotherapy. Something called "fluidtherapy", I think she said? That was the main reason they needed to go earlier, so it was a panic day, they weren't quit packed yet! So tomorrow she will get her main line put in and we begin....

Jan 21st, --Well the Jan 28th date for admittance is finalized today. Also we found out some details about the donor. Male 38 years of age, Caucasian 140kilos in weight, which I figure has to be around 350lbs!! (2.2 kilos per pound?, right) and in good health. I figure it must be one of the Oakland Raiders lineman, that got robbed out of the playoffs!

Jan 8th.-- There is a tentative date for Jan 28th of 2002 for Alicia to be admitted to OHSU, to start her BMT. The dates could be moved around a little due to the fact of when the donor can make it in to the harvesting center nearest them. So Lisa and Alicia are packing their bags!

Jan 3, 2002-- Conversations with DR Godder from OHSU have brought up discussions about mini-transplant verses normal transplant. Mini transplants have been used only in older patients average (51 ors) and blood related disease, but the medical data is lacking for younger and of course nothing to do with glanzmann. But the lack of data makes this procedure "experimental" to some doctors and we have DR Godder contacting DR Nugent, Orange County glanzmann specialist, to confer with the data. We also have received medical documents referring to the three previous BMT for glanzmann, pretty cool information. All three were children, under the age of 6,in European countries, approximate dates of 1984,1994 and 1997 using sibling related donors.

Nov 28th-30th --Alicia had EKG and CT scan at OHSU. Found out that the cord blood sample from Germany is not a good match. The results came back with two different conflicting tests, they are requesting another sample, but the doctors are not optimistic about getting one. They are going to request that the two adult donors be contacted to further the testing. The doctors said the transplant could happen within the next two to four weeks, depending on how quickly the donors are able to get in to their doctors for more testing.

Nov 18th ,-- Website goes live again..

Nov 15th, --We have an appointment at OHSU for Nov 28th-30th to have Alicia's medical work done up. It includes having CT scan, pretty much just making sure her body is running properly.

Nov 12th,-- Website goes live!!

Nov 5th, --Word from Maureen at Doernbechers, the have a pretty good match with a Cord blood from Germany! Need to process it in states and should have those results in a week. AMEN If so then the doctors want to meet with us again in Portland, Oregon to take next step. We will get up to meet with them ASAP before the weather gets to bad! Let's get this going, all right!

Sept 29th,-- Updating Web site!!!

Sept 28th, 2001 OHSU DR's possible cord blood samples in Spain and Czech Republic available, but other two one not matched properly and other not enough cell count.

I have decided since www.aliciaw.com is no longer available that I will try and recreate the website in a blog format. The information is a flash back in time almost 6 years from today. I hope this information is useful to other parents of Glanzmann Thrombosinia in need of support and prayer. God still does miracles!

Aaron W