Elyse's abdomen is still distended. There is no change in her condition. I could see that she is having a difficult time taking each breath. We will not be posting for a while. Elyse's doctors are telling us that she is in a dangerous stage of VOD. The next post will either be the very best news or the worst. Please be in prayer. Thank you for your support.
Thursday, September 27, 2007
We were told by Elyse's BMT doctor today that this is the most critical portion of the post BMT process and we can see why. Elyse is in a lot of pain and discomfort from fluid retention do to a case of Veno-Occlusive Disease. It started out as a mild case, but now her belly is really distended and she is having difficulty breathing. It must be difficult for her to go through and very difficult to watch her in so much pain. There is a chance of death due to liver and multiple organ damage and if water gets into the lungs.
Please pray for her recovery and donate platelets if you are willing.
For I will restore health unto thee, and I will heal thee...saith the Lord.
Posted by Elyse Yu at 12:53 AM
Wednesday, September 26, 2007
We are seeing the worst of the BMT process to date. Elyse has lost 50% of her hair now and she is grunting in pain with every breath. We are moved to tears once more seeing her in so much pain. There are a few things going on right now. Her liver is eating up the platelets so her counts are low and causing the small blood vessels right below her skin to explode, which is causing small purple spots to appear all over her body.
She also has signs of Venoclusive disease (VOD) causes the veins in and going to the liver to become narrow. This usually occurs 15 to 25 days after a child receives the transplant. Noticeable signs of VOD are weight gain and enlarging of the abdomen. While there is no special treatment for VOD, all children will receive Heparin before and during the bone marrow transplant to help prevent VOD. That's why her belly is bloated and we had to go up on her diaper size.
We are in desperate need of platelets(AB) and blood, especially if you are CMV negative. If you don't know if you are CMV Negative, the only way to find out is to give first and let the labs tell you. We cannot give her platelets right away when she needs it right now because CHLA blood bank does not have platelets to give her and have to wait for Red Cross to deliver some to us. Please contact George at CHLA to schedule a donation. (323) 361-2370 firstname.lastname@example.org.
1) Her liver will not eat up the platelets (VOD)
2) Bloating will go down
3) Blood counts will go up
4) platelet donors will come in and donate
Thank you. I will update pictures tonight.
Posted by Elyse Yu at 9:42 AM
Tuesday, September 25, 2007
Thank you again to everyone who has donated blood and platelets. She got blood, platelets and plasma today. We are just so blessed to have blood and platelet donors. Elyse's nurse yesterday mentioned that sometimes platelets can be hard to come by. So sometimes there is a 24-hour wait while CHLA requests platelets from the Red Cross.
Elyse had a difficult day today. Her mucositis is worse and she is spitting up old and fresh blood along with thick saliva. She doesn't know how to spit out her saliva so she swallows it. The saliva and blood that she swallows makes her nauseous and she eventually vomits. When she sleeps she sounds very congested from her thick saliva. She is getting an increased dose of morphine to keep her comfortable but she's now very itchy from the increased morphine. She was given some benadryl to help with the itchiness. She's been very sleepy most of the day because of all the sedatives she's getting. Being sedated so much, her oxygen level wasn't where it should be. So the nurses set up the oxygen mask for Elyse. Seeing Elyse with an oxygen mask was difficult. I just could not get myself to leave. She seemed so helpless and there was nothing I can do to lessen her pain and suffering. So while I'm here I I'm updating her blog. It's now 9pm and I think I should leave now if I'm going to come back tomorrow rested. She'll be getting another infusion of blood and platelets tonight because her blood levels are low. She has a condition right now (doctors said it's to be expected at this point) in which her liver eats up a lot of her platelets. So one infusion of platelets was not enough today. She's also retaining fluid so she gets meds to flush out fluids from her body. Well, enough said for now. I ask for your prayers.
Posted by Elyse Yu at 7:20 PM
Saturday, September 22, 2007
Before I report on Elyse's condition, I would like to thank everyone for donating blood and platelets. Some donors were reported to be CMV positive so the hospital could not use blood and platelets donated by those people for Elyse. If you are CMV positive, don't worry, it's nothing serious. You can do research on the internet to find out what that is. I went down to the blood donor center this morning to meet with George and he told me that he's gotten good response for Elyse. We are so fortunate to have so much support from friends and family. We thank you and ask for your continued blood / platelet donations as well as your prayers.
There are a few things to be thankful for today. I heard Elyse giggle for the first time in many weeks. Isn't it funny how your child's giggles could bring so much joy and hope? Susan and I were comforted to know that she is not in pain all the time. Oh, the morphine drip also helps to keep pain at under control. The other thing is that she had 1.5 Oz of formula today after fasting for about 1 week. I knew she was hungry because she started sucking on her finger and the back of her hand, so I tried to feed her a bottle of formula. She put it in her mouth and would stop sucking after trying once. I pulled the bottle out and found blood on the nipple. I implimented 'Plan B' and gave her the formula through an oral syringe. Elyse would not take it at first thinking that it was medicine, but quickly took the formula willingly after realizing what it was. Thank God for small victories.
Her counts blood counts are down. White blood cells are less than 0.1, Platelets have dropped down to 23K. She was given blood, platelets and plasma donated by our friends. She finally fell asleep listening to her favorite Christian lullaby CD. I will be at the hospital all day tomorrow. I am looking forward to it.
Erin, our little hero is still pale from her marrow donation. She is eating well, but it will take another week to replenish her marrow supply. Faith is happy and doing well also. God Bless you all till our next post.
Posted by Elyse Yu at 8:20 PM
Friday, September 21, 2007
Hello everyone. Elyse is sleeping now so this gives me a chance to update her blog. I can hear her snoring more because her saliva is thicker due to her mucositis. Her mucositis is getting worse. She is starting to cough up blood because of the sores in her esophagus. This is to be expected at this point. She's on a continuous morphine drip to keep her comfortable. Before she's given medication, she gets a shot of morphine in her IV to help her swallow her meds. She still cries a lot when she's given her meds. I don't think the morphine numbs her pain all that much. The mouth sores should start to heal once her counts start to go up. Right now her platelet count is decreasing fast. This is to be expected as well. On Day 0 it was at 180,000...on Day +1 it was 118,000 and on Day +2 it plummeted to 44,000. Tomorrow her count will probably drop down to about 20,000. So she'll start to receive platelet infusions tomorrow. I want to thank everyone who will be donating your platelets.
I realize that I need to pace myself if I'm going to continue taking care of Elyse. Everyday before I step inside Elyse's isolation room, I scrub my hands and arms for 3 minutes, put on a gown, mask, gloves, cap and shoe covers. I have to make sure that I'm well hydrated and step out once in a while. I ask for your continued prayers for Elyse's recovery and our family's health.
Posted by Elyse Yu at 2:27 PM
Tuesday, September 18, 2007
Today was a day of mixed emotions. We starved Erin in preparation for her bone marrow aspiration with hopes that they would take her in as soon as we got there. That is exactly what happened to our surprise. Erin might not have known what she was there to do, but we were so proud of her none the less. We were with her through pre-Op, gave her a kiss and saw her vanish behind the double doors of the operating room. We were sad knowing that she might have some discomfort afterwards, but so glad that Erin was a match. The procedure was over in 40 minutes.
Erin was asleep and paler than usual after the marrow aspiratin. The doctor told us that this is to be expected since she gave 1/5 of her blood/marrow supply today. She slept most of the day and took in 5 ounces of formula at 8:30 pm. She is recovering nicely.
The marrow came up to Elyse's room at around 2:15 PM. Elyse was ready to receive the marrow by 3:00 PM. It would be a 4 hours process with a relentless 5 minute interval monitoring of her vitals and temperature for the first hour then every 30 minutes there after. Susan and I couldn't believe that it was finally time for the transplant. Outsiders would have thought that the bone marrow transplant itself was anticlimactic. They hung the marrow up and opened the tube and the marrow flowed in. But, to us it was an emotional accomplishment of the efforts of countless friends and family members for the past 4 months. Susan started to cry as the nurse opened the IV line and as Erin's marrow slowly traveled through the IV line towards Elyse's heart. She didn't have to tell me what she was thinking since the same thoughts raced through me. It was a time of refection of everything we had gone through from the discovery of HLH, the many visits to the hospital, the many marrow drives, the intense focus we tried to maintain throughout the 4 months, the fear that Elyse would not make it this far and especially the suffering our Elyse had to endure.
The Lord has been good to us. He has given us prayer partners who have made a huge difference in this situation. Thing could have been much worse, but your prayers have helped shape events to our favor. There are still many critical benchmarks that we have to overcome after the BMT. Elyse is showing signs of mucositis (mouth sores from chemo)and refused to eat since for 4 days now. She has been groaning quietly almost all day and is weak from lack of milk. There are other things to be mindful of like GVHD and organ failure. So, we will ask for your continued prayers and donation of blood and platelets.
I taped most of what happened today and hope to get a streaming video on Elyse's website soon. Thank you all for your support. We couldn't have come this far without you all.
Praise God for his goodness.
Posted by Elyse Yu at 10:29 PM
Monday, September 17, 2007
This day if finally here. We can't believe that she will be getting her transplant tomorrow. With your prayers and the grace of God we were able to get to this point without a tremendous amount of hardship. Nurses at CHLA consider day 0 as a second birthday...a new chance at life. We are both scared and excited to see this day.
We brought Erin to the hospital today for her final blood test and physical. Erin had a hard time during her blood draw. They could not find her vein so they poked her 7 times before finding her vein. Seeing Erin suffer almost brought Susan to tears. We hope that technology will improve enough in the future to a point where finding a vein will not be left to guess work.
Elyse has been in pain the whole day today. She's been groaning and lethargic. It breaks us to see our daughter in so much pain. She is on morphine drip now and they just increased the dose at our request. They take pain management seriously here and asked us not to withhold pain meds. Elyse is looking at me as I type this entry. She grunts and moans in Susan's arms as she stairs at the bright screen. It has been 3 days since she's eaten so they will start TPN (Nutrition supplement) tonight.
Erin is scheduled to give marrow tomorrow at noon (schedule might change). CHLA is doing us a huge favor by giving Erin a room in the BMT ward after they take her marrow tomorrow. They are also allowing Susan to sleep in the room with Erin. They will be almost right next door but Erin cannot see Elyse...not even through the bubble. We have pictures of Erin, Faith and the family in Elyse's room so I hope that will remind Elyse of her sisters.
Thank you for your prayers and your blood and platelet donations.
Posted by Elyse Yu at 7:38 PM
Saturday, September 15, 2007
Wow, it was a difficult day for Elyse today. I held her for most of the day and tried to give her some measure of comfort. She didn't smile once, which is rare. Instead, she cried, moaned and groaned the whole day. I think that her mouth is starting to hurt from the mucositis. She takes the nipple then hestiates a bit and spits it out and starts crying. I requested morphine for her twice today.
We are looking forward to Tuesday and hope that we can see a healthy Elyse soon. I spoke with some 3 of the BMT parents today in the hallway of the hospital. Gary's daughter Kiara (caring4kiara.com) is going home on Monday. I felt such joy for him and his family. Kiara has been at the BMT room for 2.5 months and I am sure that it would be nice to have Kiara at home and try to get back to "normal." But, it will take some time to get normal since they will have to maintain a dust free/germ free environment for Kiara once they get home. We were happy to see that Ethan and Keane are at the BMT ward with us...they are at day -7. They are always in good spirits and bring such life to the BMT ward. Please pray for us all.
Day -2, Susan will be with Elyse and I will get to spend some much awaited time with Faith and Erin at home.
Posted by Elyse Yu at 8:40 PM
Friday, September 14, 2007
Yesterday was a rough day for Elyse. Her rash spread all over her body. We don't know the cause of the rash. Labs were sent out to check for viruses and bacteria. We are hoping that neither is the cause of the rash. She may also be having a reaction to medication. When Tim and I came in this morning, her rash cleared up a lot. We were all relieved. She also started a chemo yesterday called rATG. As I mentioned in yesterday's post, she was given tylenol and benadryl to counteract possible reactions to the chemo. A few hours into the chemo, her heart rate jumped to 190 beats per minute and she woke up crying. She also spiked a fever and vomited. She didn't have much of an appetite but the nurses assured me that she won't get dehydrated because of all the fluids she's getting around the clock. Benadryl kept her sleeping most of the morning. She looked very groggy throughout the day. Today she'll be starting Cytoxan. This chemo can make her bladder bleed so she'll get extra hydration to flush out the chemo as quickly as possible. This afternoon she started to gag and cried inconsolably. The doctors said that she's probably really nauseated from all the chemo. So she's eating very little. She drank barely 4 ounces of formula all day. She may be having pain from the onset of mouth sores (mucositis). So she got two doses of morphine today. In a few days, if she stops eating all together (which is very common at this point in the process), she will receive IV nutrition until she can eat again. It's very painful to see my baby go through all this but I am looking forward to the finish line. I hope to see Elyse whole again soon. Today was an emotional day for the staff at the BMT Unit. A 21-month-old girl who stayed in the Unit for 14 months finally got to go home today. Her parents, doctors, and nurses cheered her on as she stepped outside her isolation room for the first time in 14 months. Many people were in tears. I can't imagine what their journey was like for 14 long months but she is well on her way to full recovery. Please pray for Elyse during this very grueling process.
Posted by Elyse Yu at 7:23 PM
Thursday, September 13, 2007
I finally got a moment to go online. It's 10am and Elyse is sleeping after a bath and got some benadryl for a rash that the doctors/nurses are monitoring. The rash may be a reaction to chemo. Elyse has not been sleeping well during the day. Yesterday she took one nap in the morning and she was up all day, just taking short 15-minute naps in my arms. When I try to put her down in her crib, she would cry inconsolably. She's not quite used to the new faces and new environment. It's very tough for her wake up alone at night and we're not there to pick her up. The nurses will hold her when she cries at night but I'm sure she misses the comfort of having a familiar face to soothe her. It's difficult to leave her at night but we need to go home and get rest so we can continue taking care of her.
I can't believe we're already on day -5. She finished 4 days of one type of chemo called Fludarabine yesterday. This chemo can cause seizures so she was getting anti-seizure medication along with the chemo. She'll get her last dose of Busulfan, another chemo, tonight. Today she'll start on a new chemo called rATG. This chemo has a high tendency to cause reactions so she'll be getting a dose of benadryl as a preventive measure. She'll also begin taking a steroid called MethylPrednisone. I hope that the side effects from all the medications are minimal. To give you an idea of all the medications that she's on ....they can be categorized into the following: 1) antibiotics 2) anti-viral 3) anti-fungal 4) anti-graft versus host disease
5) immunosuppresants (chemo) 6) temporary immunity 7) blood pressure 8) electrolyte replacement.
The transplant day (day 0) is Tuesday 9/18/07. We will be bringing in Erin on 9/17/07 for one last blood test and physical exam. Doctors will harvest her marrow on Day 0 and Elyse will get her transplant later that day.
Thank you for all your prayers.
Posted by Elyse Yu at 10:17 AM
Wednesday, September 12, 2007
I wanted to update you all on Elyse's condition. She's been getting 2 different Chemo meds daily since Monday and it looks like she is feeling the effects according to Susan and nurses at CHLA. It is difficult to see her struggle, but we are also looking forward to day 0.
Elyse's kidney test results came back with low marks, which means that her kidneys are not functioning at normal capacity. They are saying that her kidneys have been damaged and we will have to see if this is long term. We are praying that it isn't. Just, one more obstacle to overcome...right?
I would like to thank everyone for contacting George at CHLA to schedule a blood and platelet donation. Elyse may need another transfusion as early as tomorrow. Family members cannot give blood or platelets until after the BMT. We've had to rely heavily on our friends and Elyse's supporters till now and we thank you all for rising beyond our expectations. We are so blessed to have so many who care for Elyse.
Posted by Elyse Yu at 12:09 AM
Sunday, September 9, 2007
The coundown has started and we are at day -10. Elyse started her Chemo today and we were told that the effects of Chemo will not surface for a few days. We are always hoping for the best. I took some pictures of Elyse's BMT room and of her so please check them out.
I found out that Elyse can sit up by herself today (pictures). She might not be able to flip over like Faith and Elyse, but she is ahead of them in this area. I finally got to see Faith and Erin (awake) this morning. They have grown a bit in the past few days. They are so cute (no pictures...sorry).
CHLA is awesome! They have the best nurses and staff.
Posted by Elyse Yu at 1:46 PM
Saturday, September 8, 2007
Elyse was admitted to CHLA last week. She is currently in one of the Clean Rooms in the BMT ward. A central line was placed in her chest yesterday in preparation for Chemo and BMT and the PICC line in her leg was finally removed. It was strange to see the two tubes sticking out of her chest, but thankfully Elyse doesn't seem to mind that much.
Susan and I have been getting very little sleep for the past few days and need to get some rest soon if we are going to keep up with this schedule. I haven't seen Faith and Erin for 3 days now...I miss them. Susan finally went home today to take care of the Faith and Erin. I am here at the hospital posting this blog entry as Elyse sleeps.
The chemo treatment will start on Sunday. BMT should take place on Sep. 18th (day 0). We will have to take Erin early that morning. We are hoping that Erin will recovery quickly from the procedure.
Thank you all for volunteering to give blood and platelets. Please make an appointment to give with George at CHLA now that the date is set. Friends have told George that they will give blood and platelets as often as they would allow. Thank you all for that - we are moved by your love for Elyse. As we mentioned Elyse will need 2-3 Blood Donors and 2 platelet donors per week for now. We've gotten inquiries of whether people outside of California can donate. Unfortunately, you will have to come to CHLA to do this. Thank you for asking though.
I will post another update tomorrow after Elyse's first Chemo.
P.S. Dr. Hofstra, if you are reading this... Thank you. I hope you stop by and see how Elyse is doing.
Posted by Elyse Yu at 3:02 PM
Sunday, September 2, 2007
Elyse's schedule has been delayed due to scheduling issues for her pre-BMT examinations. We know that she will be admitted this month, but dates are still tentative. We will post dates when the hospital nails them down for us.
In the mean time we need your help. Elyse will require 2-3 blood & platelet infusions per week due to the symptoms caused by Chemo and pre-BMT drugs. The conditioning drugs causes sores and really drop blood counts, so we were told that it would be a good idea to get friends and family members to come in and donate blood and platelets at CHLA. Since she will need this for about 2 months from the time she is admitted, we need to spread out the blood donations. I will be scheduling the blood & platelet donation schedule so please email me.
If you are willing to help donate, here are the steps to follow:
- For blood and platelet donations, please read the information below first. Remember that Parking is free for blood and platelet donors, please ask for validation at the blood donation center's front desk.
- Contact George at CHLA Blood/Platelet Donation Center and tell him that you want to donate for Elyse Yu (Directed Donor). (323) 361-2370 or email@example.com
- CC me on all email or email me the confirmed dated for your donation.
- I will send you a reminder by email the day before your appointment date.
Blood Donation Information (from CHLA.org):
- Donor must be 17 years old.
- Donor must weight at least 110 pounds.
- Donors are required to bring a picture ID and one of the following: a driver's license number, passport number or SS number.
- Donors are encouraged to have a healthy meal before donating and to drink plenty of fluids.
- For Plateletpheresis donors only: Do not take any ibuprofen, aspirin or non steroidal anti-inflammatory medication 36 hours before your donation.
- Directed donors must present the following information at the time of donation: the patient's name (as registered in the hospital), date of birth and/or medical record number.
- A donor's blood type will not be determined before donation. If donor’s blood passes all tests, but is not of the appropriate blood type, it will automatically be released for use by other patients.There is no credit system for directed units donated at local hospitals, or any other collection agency.
Please do not donate if You:
- Are sick or not feeling well
- Have donated blood in the past 8 weeks
- Are pregnant
- Have a bleeding disorder or blood disease.
- Have had hepatitis after the age of 11 years
- Have had Babesiosis or Chagas disease
- Have ever received growth hormone made from human pituitary glands
- Have ever received a brain covering graft
- Or any of your blood relatives have Creutzfeldt-Jakob disease
- Have taken Tegison for psoriasis
- Have been injected with bovine (beef) insulin since 1980
- Have ever used a needle to inject nonprescription drugs (including steroids)
- Have taken clotting factor concentrates for a bleeding problem
- Have AIDS or have had a positive test for the AIDS virus
- Have taken money or drugs for sex since 1977
- Are a man and have had sex with another man since 1977
- Have been treated for syphilis or gonorrhea in the past 12 months
Thank you for your support. If we find that there are more than enough donors for Elyse, we encourage you to make a non directed donation so others may benefit. We also have the Denke's twins boys Ethan and Keane to support. We will make another request for donations on their behalf once we find out when they are ready for their BMT.
Posted by Elyse Yu at 11:23 AM