Day 10

Her neutrophil counts are holding are 2000 which is just within a normal range, but average range is 4000. She had a fever last night which she beat without the help of Tylenol. She feels yucky but a better yucky. The virus' on her body are getting a bit worse which is what we thought would happen without the Cidofovir. I believe everyone is back on board with restarting this next week which makes Kelsey happy. It makes her nauseous, but it is worth this price. All her doctors are still amazed at her recovery. This was one of the things we prayed for at our prayer meeting before we left, and praise God it has come to pass. There will soon be talk of discharge, I think before the 30 days. Continue praying for her quick recovery, no infections, no fevers, no downhill swings. We won't be looking to the future or anticipating this for we must live only to get through that day. Each day brings decisions, so we pray that each day these are made with wisdom.

Please pray for Karly as she is feeling more tired than normal. Her skin is getting worse. Her hearing is down a bit. She returns with Grandma on Nov. 21 for her refueling and appointments. She went to sleep on the sofa and was still on the sofa the next morning when Tracy left for work. She said she had woke up, but was too tired to go up to bed. The picture was too cute not to share.

Sister Debbie just showed up with a dairy free smoothie for Kelsey and some super soft thong slippers. We are going out for awhile. Hannah is staying to keep Kelsey entertained. There are 2 cute youtube videos with Konner and Kassidy that I will try to share when I get back. One of the families that does school with them made these with their 5 kids.

Talk soon,
Love,
Mom

Day 7

Day 7 finds the doctors extremely pleased at where she is in regards to engraphment. They really believe this is what's happening. Her Absolute Neutrophil Count is 870. This is good news. They have said all along that she would be outpatient when counts are over 1000 and no fever. Now the fever continues to haunt us, but it is normal to roller coaster. Riding a roller coaster is sorta what it feels like in terms of emotions. Good news, bad news, good news,...Doc said this morning that in 3 days, we should be able to say that forever in history, Veteran's Day 2010 was her engraphment day. She is very tired today and had another fever this morning which again is normal. She just gets to rest. The first results came back from yesterday's blood cultures as negative. Still good news. She has not lost her hair. She has been eating a little everyday. All I can continue to say is how wonderful everything is at this point. Again, if this is truly engraphment, she is the rare one. To engraph after 7 days only happens in 20% of the cases. Go God! That just gives me goose bumps and watery eyes all at the same time. This is amazing to watch! We are finding refuge under His wings.
Love,
Mom

Good news this morning...then

We started the day with good news. The doctors cannot say for sure that she is on her way to engraphment, but it is looking good. By Friday, if the counts continue to rise, they will say she has engraphed. The infectious disease doctor was just in and he says that this is the 6th cord blood transplant they have done and that this is a record as far as her counts reaching the level they are by day 6. The bad news is that she has a fever again. This could mean one of two things. She has infection in her lungs or sinuses that isn't being covered by the two major-hitting antibiotics, the antivirals, or the fungal. I suppose she would be put on another drug. The other thing would be engraphment syndrome. It is more likely this. This would have the same symptoms as an infection so a ruling out process would begin. At this point she's had a chest x-ray. It will go symptom by symptom. Just keep praying. People are noticing how well she is doing. Her last nurse stopped in just before leaving and was telling us that as she was sitting outside our room she kept noticing all the famous doctors that they never see going in and out of Kelsey's room. It made her smile and get a kick out of it. This is really good news that we have such awesome doctors. Her head pain and nausea have been better. She is tired. Thank you for your encouragement. We are not alone. We do not feel alone.
Love,
Mom

Out of the ICU

Sunday found her doing better, but head pain and nausea were still a problem. They still had to use dilaudid and atavan to keep her comfortable. They had determined through blood cultures that the port had been infected from the sepsis. Rats. She really liked her port. The port was removed today. She recovered in ICU and has been released back to her room tonight. She had great doctors and nurses in the ICU. I felt confident in her care. She didn't like the constant monitoring...leads coming out of her, blood pressure cuff always on, both IV lines in constant use, pulse oximeter, and beeping and warning sounds going off all night long. She was viewed through a sliding glass door. She was so happy to be back in her quiet, closed, and dark room. There is still a lot of debating with her oh so many doctors who battle on her behalf. She has made a super great recovery...Kelsey said she was told she was lucky, but we know it wasn't luck. To God be all the praises! She is doing remarkably well even though her counts have bottomed out. She has many issues still pending, so I won't go into all those details, but continue the vigilant prayers through the next weeks as these stem cells find their home and mature. If an issue arises, I'll give specifics to pray about. Meanwhile, I hope that we can both sleep well tonight. Tomorrow is a new day.
Love,
Mom

A tough 24 hours...

Cell day went well, even the next day was going pretty well. She took a shower, but upon exiting, she was in severe head pain and nauseous. She finally got some narcotics, but didn't help much. Not much of anything was working. She spiked a fever. Blood cultures were drawn from both lines and the port. Strong antibiotic was started. Continued monitoring, a lot of fluid given. By morning, there was a second spike of fever and her blood pressure was too low. They sent her to ICU this morning. At ICU, her fever was down, the blood pressure was stabilizing from all the fluids but remaining low. Soon thereafter, first of the blood cultures were back confirming what the suspicion was...staph aureus in the blood or sepsis. A plan was made, more antibiotics on board, CT followed, new line placed, old line pulled. She is finally semi-coherent after 24 hours. I believe the plan is working. Sister Debbie traveled to NIH this afternoon, found me in the waiting room, brought a sandwich and waffle fries, and stayed with Kelsey while I received a well needed shower. So upon returning to the ICU unit, I find Kelsey awake and able to talk. Debbie was sitting in the one and only chair, so we asked the nurse to bring in another one. She did. But Debbie said that she'd keep the comfy one and that the other one was mine. Well, the nurse found an even more deluxe chair and wheeled it in also. This one was quite deluxe equipped with head rest, able to recline, tray table, and drink holder. So, Debbie confiscated that one. I took a picture, but have not been able to download it yet. Anyway, it caused laughter with us, the nurses, and other onlookers on the floor. In fact, a nurse came in and commented about how happy we were. I said that is just the way we are; we will find happiness whatever the situation. We are not a "woe is me family". This situation is fearful, yet we knew it could happen. I didn't think we would end up in ICU. I am getting a lot of encouragement and reminders and prayers. We feel confident with the treatment. We feel confident in our decisions. Thank you Jesus! Just as a side note and another piece of laughter, Kelsey has a green chin and chest from the antiseptic used for line placement. Debbie said it was the color of the wicked witch of the west. Kelsey said it reminded her of the I Love Lucy story where Lucy asked the doctor what was wrong with her. He said, "You have the goblutz." Lucy says, "What does that mean?" He says, "I'm going to have to remove your zortch." I really don't know what that has to do with anything except it is playful and fun. Laughter is the best medicine. Thank you Jesus that we can laugh in the midst of crisis. Thank you church for all the prayers. They are sustaining.
Love,
Mom

It is her new birthday...CELL DAY!

So we are very excited that the cells are going in right now, started at 3:42pm. Almost in now. Finished at 4:18pm. They will wait an hour to see how she is doing, then start the thawing process on the other one...probably around 7:00pm. Then we wait. I suppose this will be the hardest part. We know it will be the hardest part physically for Kelsey. When her counts drop and the full effects of everything occur, the doctors say she will feel the worst she has ever felt. She says she is fully prepared for this. We also know that we are utterly dependent on Him for everything, including our next breath. So thank you for praying and encouraging and staying near to us in spirit.
Love,
Mom

Interesting pictures...

One of the things that we all like to do when we are here is learn. We ask questions about the drugs, procedures, new people they find with this disease, what the lab is discovering, anything goes. With the stem cells, we wanted to know details, so now you get to know some of the details.
CB_Shipper – This is the outer canister that the cord is packaged in
CB_Inner Shipper – This is the canister which is filled with liquid nitrogen to keep the cord frozen during transport – it is monitored with a continuous temperature reading which we download upon arrival to ensure that there were no warming events
CB_ Freezer – this is the freezer they work on to keep the unit cold when it is opened.  The techs wear gloves – if they touch the cassette (the metal thing that the cord is stored in), it would burn their hands
CB_ Unit – a picture of a typical cord blood.  Kelsey’s cords will be in a bigger package than this because of the way they were processed, and the bank processes where the cords were collected.
CB_Bath – On the transplant day, we will remove the cord from the freezer and thaw it in a warm water bath until it’s slushy
CB_Post Spin -  It will then be diluted, spun, and the extra “stuff” will be removed – this is a picture of the separation of the cells from the extra junk…
 
The final bag will have about 100ml or so – only a small amount of that is actually stem cells, the rest is media to keep the cells happy.  Each bag will take about 20-30 minutes to go in, and Kelsey will be monitored closely the whole time.  After an hour, if she has not had any reactions, we will call for the second unit, and they will begin the thaw process at that point.
So now doesn't that make you feel better. I know, not really, but we truly like to know these details. Even when we think about what is happening to her body right now, it doesn't make us feel very good. We are killing off her immune system leaving nothing to fight anything. But, this is so her baby cord blood cells will have a chance to find their place in her body and grow up. It seems weird that she will have 3 blood types at one time. Eventually one will win out. Our job is to continue to seek His face, His path, and trust His ways. "Blessed is the man you perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love Him." James 1:12. Everyday we have to find things we can rejoice about and stay positive. You will not find grumbling here. We are grateful for this opportunity. Find God in everything you do all day long and be thankful.
Love,
Mom