Monday, November 29, 2010

Day 25

WOW, we are in ICU again. Another serious condition has come about. It is weird how you can look back at something that's happened and when it didn't make sense at the time, it does now. Yesterday, Kelsey commented between ins and outs of consciousness and puking, that there were a multitude of words that were buzzing through her brain making her nauseous. It didn't make any sense, but I knew it meant something. It was just too weird. This morning I was called around 7:00ish to come over because she was disoriented. She sure was. Her sodium was low, blood pressure high, fingers tips still purple, nausea & fever present. She was moved to ICU and will remain here until her electrolytes stabilize. Her morning consisted of chest x-ray, head CT, MRI of brain, echo-cardiogram, EEG of brain, lumbar puncture, 2 biopsies of fingers, another mid-line pic put in. A lot of IV medications being pumped in. The diagnosis came is as suspected. It is a viral infection of the brain. It was also present in her spinal fluid. It is found in the memory part of her brain. She knows me, herself, most of her doctors, not where she is or what is going on, she knows what a pencil is, and stuff. She doesn't know what year it is, sometimes she knows her birth-date. You cannot believe most of what she says because she doesn't know what is going on. She told the doctors that she had a good day yesterday. She ate 3 different kinds of breakfasts this morning. She talked with Karly this morning. NOT It is hard to watch. Fortunately, she has said the cutest things. I thought of how much fun Trent would have with this. The two of them would be hilarious together. We have hugged and smiled at each other a lot today. This is a serious situation that will take a long time to treat. She has had a few small seizures where she just quits speaking mid-sentence. They started an anti-seizure drug. This is one thing they are quite concerned with. They don't want to see a seizure that is difficult to stop or where she has to be intubated. Their fingers are crossed, but we have prayer. They cannot give me a prediction on anything. They say that each patient reacts differently. So once again, we cannot look any further than tomorrow. I am grateful for each day I have with her.
Love,
Mom

Sunday, November 28, 2010

Day 21-Day 24



Thanksgiving Day was wonderful. We shared a meal with immediate family, uncles, aunts, cousins,and second cousins. Kelsey's favorite was mashed potatoes with gravy. It was a slow beginning that morning. We had planned on leaving at 10:00, but Kelsey was nauseous and her head hurt so she was moving rather slowly. The morning IV meds slowed her down, and then they added one that didn't finish until noon. Fortunately, the meal was planned for 2:00, so we made it in plenty of time. Among the folly for the day, was a well decorated house for my 50th birthday. The girls hooted and entertained themselves with printing pictures of me when I was around 12. They were taped all around the house even the bathroom and inside the refrigerator. After the meal, the boys found the theater wigs and "put the band back together". This was so much fun to watch. Oh, by the way, the other photo's caption is, "Which one is Debbie?" We had so much fun. Kelsey slept much of it, but we took videos of "the band". When she returned Thursday night, her platelets were very low. So premedicated her, and put them in. I was with her until 3:30am. Friday and Saturday were fairly good days for her. However, her neutrophils dropped to 240 Saturday night so she had her shot. Today didn't start out too horrible, but the rest has been very horrible for her. Her counts are pretty good for today, but she has been extremely nauseous, the most since we've been here. None of the nausea meds, dilaudid, or atavan have made it better. She has been puking all day. Finally at 7:00ish, she fell asleep. I had been informing the nurse about this unusual development, finally the resident came in. Eventually, I glanced over at her and noticed that her fingertips are dark purple. I talked with the resident about the unusualness of the day, she called the attending who came in and has seen it for herself. She has conferred with the Pediatric Oncology doc who has seen Kelsey from the beginning. The best guess right now is acute graft vs. host disease. It could be an infection and gvhd. They are treating gvhd with a large dose steroid. Her blood pressure is up. She has hit a fever, but blood cultures were already drawn. The med that was changed on Thursday is restarted for infection. Her platelets are very low again, so more of that tonight. This is going to be another long night. I pray that I will get to sleep for some hours tonight, so I can be a good caregiver. I was already tired today from lack of sleep from family being around...ya know soaking in all the moments I could. She has requested prayer for all things and trusts in this.

Karly and Grandma's flight arrived home as scheduled. Tracy did the mammoth drive today and has made it home safely. Hopefully took a nap, then proceeded on to the airport to collect those two. All should be home as I am typing. We left each other already starting the countdown of three weeks until they return. Tracy and I were able to leave Kelsey on Saturday in the capable care of her siblings while we shopped and enjoyed each other.

As she is struggling through this period, helpless, miserable, and weak, a brief thought comes into my head thinking what have we've done. Then I'm reminded that this decision was the Lord's. Her life is the Lord's. The NOW is the only place to begin anew. Many things are beyond us, but I am still rejoicing in the present. Some of these days are very tentative, some seem more certain, but all are possible to get through with God.

"For nothing is impossible with God" Luke 1:37
Love,
Mom

Wednesday, November 24, 2010

Day 20


She started the day early with an MRI of the brain which looked good. This meant no lumbar puncture:) Her head pain was pretty bad until 2 doses of oxycodone finally cut through. The skin biopsy from yesterday revealed graft vs. host disease. This is the cause of the rash and probably the liver counts. She is already on the correct drugs for this, so if it gets worse then there would be an increase in the anti-rejection drugs. She will be allowed to go with us to my sister's for Thanksgiving with strict instructions as to what to watch for. YEAH! They are changing one of the antibiotics because the sputum culture showed something that needs a better coverage plus she may already be resistant to the one she is on...this is still pending. The new antibiotic makes Kelsey's body hurt worse if this is possible, but that is what she has to do. She is still on respiratory isolation pending the nasal wash culture. Her counts for the most part are just where they need to be.

Everyone showed up safely this morning which made for a good day. Kelsey had dad buzz off her remaining 1 inch of fuzz. Kelsey buzzed dad, Tyler, and Trent. It was a bunch of fun. The best time was the photo shoot afterward.

Everyone is tired. I'm up later than usual and just need to get everyone settled in. Kelsey is in sleeping mode for now. Thanksgiving will certainly be what the Koch's are doing tomorrow.

Blessings and Happy Thanksgiving!
Love,
Mom

Tuesday, November 23, 2010

Day 19

Everyday starts with a migraine and concern over such. Kelsey texts me this morning and says, "I need my mommy." The rash is the same. The dilaudid and oxycodone don't cut it, so they are working on a better drug. Since the transplant the head pain has been much worse. Several thoughts come into play...drug related(from anti-rejection drug), sinuses(but look better), brain issue, meningitis has to be ruled out so performing all of the tests that come with ruling things out. The rash can be related to several things, but 2 most likely causes are Graft vs. Host Disease or reaction to the IV antibiotic. Again, it is more a ruling out process. A skin biopsy was taken this afternoon. The nasal wash is still pending. We are still waiting on the news about the chimerism. We are hoping for the Spanish cord to have a majority of cells present, but are not opposed to the German cord either just as long as it isn't Kelsey's cells. She received her immunoglobulins today which went well. Except for her liver counts which are still rising, her counts are just where they need to be at this day into the transplant. She is mostly just worn out and needs a break. The doctors are trying very hard to get her on pass for Thursday. We pray that all things pending for tomorrow come back for the positive. Please pray with us.

Tracy is making the trek out here with everyone else so pray for safe travels. We are excited to be together. I suppose there will be much squishing going on tomorrow. Another blessing today, Kelsey received an extremely cute, soft, loosely knit scarf that immediately was wrapped around her bald head and has looked so adorable on her today. Love the look. Although it is cute, she is not into sharing the photo with the world just yet.

Karly had a good check-up. She has been anemic since the lymphoma last year, so they checked again and have put her on some supplements. This may help with her tiredness. Her ear tubes were just beginning to infect, so antibiotic drops started. Found out why her skin was getting worse and have a plan to correct this. We talked with the transplant doctor about when Karly will be started. We have a tentative plan to start the eligibility week the second or third week in December. This would mean the transplant would need to be started within a month after we sign the paperwork. This is a loosely based plan depending on how Kelsey is doing and if anything needs tweaked in the protocol. He reminded me that this is the first cord blood transplant for this disease in the world. Also, the type of conditioning they did has not been used by the other related and unrelated transplants for this disease. So many factors, in theory, and of course experience went into the planning for this, but no one knows what will happen. He wants to make sure Karly will have the best outcome after his experience with Kelsey. Sounds like Kelsey, once again, is a guinea pig, but a cute one. She doesn't mind. She knows what this means in the long term.

Pretty cool. In the devotional today it talks about being ingrafted in Christ. We are to marvel at the wonder of being a new creation, grafted into the Messiah. Kelsey is already ingrafted in Christ, and now she is being engraphed physically. Just a neat vision.

Love,
Mom

Monday, November 22, 2010

Day 18

She's had another long day. Good news is that they gave her the Cidofovir. With that drug comes a lot of fluid, nausea, and a crushed up nasty tasting pill that is taken 3 times. Just the mention of its name makes her gag. It is very mental to get through it. Karly and I are trying the randomness of silliness to take her mind off of it. In the midst of that is more platelets, reaction, itchiness, ice packs, heartburn on fire. We are trying to laugh our way through it. Thank goodness Karly is here. She is great at funniness. Liver counts still rising, Yuck. Rash is on arms, face, legs. She is wearing a beanie tonight although it makes her head hot. With the hair gone, the molluscum really shows so she likes to hide it. I got her a couple of scarves and t-shirts for a head wrap. We're learning. She is blistering under her dressing around her pic line...kinda weird. Her sputum culture showed some weird growth, so she is on respiratory isolation...currently pending the nasal wash. Her chest x-ray looked better than the one last week. Finally she is resting...maybe no drama tomorrow?

I loved my devotional reading today. "A thankful mind-set does not entail a denial of reality with its plethora of problems, instead it rejoices in Jesus, Our Savior, in the midst of trials and tribulations. He is our refuge and strength, an ever-present and well-proved help in trouble." I love this truth.

The message on Kelsey's blog last week is finally able to be copied. With the computers blocked here from certain functions, I was able to get what I needed while at my sister's. May this bless you as much as it has blessed us.
"I just happened to notice you today on my friend's page. I am a minister in Ohio and that's how I know our friend.

I hear God talking to me about you this morning, and I just want to share what I hear him saying…

He says that your faith is so pleasing to him, you have such a high level of trust in him and his word and it truly is the kind of faith that can move mountains. He says even at your weakest you are so strong in your faith and unwavering trust in his goodness and mercy.

Your foe is a formidable one but it can't defeat you and you will not succumb to it, you will never wave the white flag of surrender but you shall triumph over it.

I see you in the future, you are older, (yes you will live to be older so don't fear) and you are standing on a stage in front of all kinds of doctors and you are speaking about very complicated things that I can't pretend to understand but it is apparent to me by this vision that your renowned in the medical community and have come up with cures for diseases and accurate reasoning about things that have yet to be understood by the brightest doctors.

You also have on a white lab coat yourself so whether you are a doctor or a scientist, I don't know. I hope this encourages you, you are in the heat of the battle right now but you are going to be victorious. I will add you to my daily prayers as well."

Blessings!

Isn't that a WOW moment? It is just like our God to give us what we need when we need it. We are energized by it. I will leave you with that. Be inspired!
Love, Mom

Friday, November 19, 2010

Day 15

Today has not been too bad. She took a shower which makes her head hurt because she is standing up too long. Her hemoglobin is down, so she is getting 2 units of blood. Her liver count is on the rise, so it's a bit worrisome to the docs. They are watching it closely. It could be one of many signs, but the one that comes to their mind first is the Graft vs. Host Disease. It doesn't do us any good to worry about it. We will continue to take it one day at a time. Today our devotional read to cast all our anxiety on Him so that is where we send it. I'm finishing up Kelsey's laundry and my sis is here. Gotta run, but blessings to all of you and thank you for your love and care.
Love,
Mom

Thursday, November 18, 2010

Day 14

This morning was a rough one. Her fever started at 100.6 rose to 102 with Tylenol, bad head pain, and platelets low. They drew all necessary blood cultures. The line had been pulled last night, so it most likely released some bacteria into her system. The incision itself was infected. They premedicated her before the platelets, however, she had a reaction. It started with an itchy tongue, the lips, palate, inner ears, and body. They added more benadryl and stopped the infusion. She recovered within an hour to only have to go get sedation for the pic line. Now, call us nuts, but I had been rubbing her head throughout all of this and her hair was a matted mess. She said to just cut it all off.(not the first time she asked for this) So when the nurse stepped out for something, I grabbed the scissors and chopped it off within an inch of her scalp. She really was quite relieved. Then, the next moment she left, Kelsey wanted it washed which only took a minute. We had it toweled off just in time to wheel her to Interventional Radiology. All went well with the procedure, and she slept most of the afternoon. Her neutrophils have indeed fallen to 750, so the shots will begin again tonight...maybe every other night, who knows.

I am still planning on leaving tomorrow for the weekend. Alex is coming Friday night and staying with her. Of course, we cannot have another morning like today. Tyler doesn't have mono. Still sick but seems to be improving. He's going to be in Muncie on Saturday. Karly and Konner have their volleyball banquet Saturday night. Whole family including grandma is going. I am excited for them. It was Konner's first year, and we had no idea that Karly would be able to even play a season this year. She did extremely well. I was telling her physical therapist out here about her awesome serve. I believe I saw a hint of pride...not really, but great excitement anyway. Can't wait to hear about the evening.

One of the things we have no idea about nor need to know is how long any of this will last. We do know that it is different for everyone. We cling to Jesus moment to moment; He enables us to persevere. Thank you for lifting us up to our Father!
Love,
Mom

Wednesday, November 17, 2010

Day 13

Her head pain and nausea were increasing over the past two days. We were attributing these things to the starting of the Cidofovir which can take the blame in part. The head pain was indeed the beginning of another line infection. Her fever was beginning to rise, and there was pain at the site this morning. They won't be able to put another line in until tomorrow, so a peripheral IV was put in her hand, and the line will be pulled today. The drug that was stopped Monday has been restarted. Hopefully, these things will put her back into a stable state of being. Her neutrophils are still above 1000 but have dropped since the shot was stopped. Still everything else is looking good. We rejoice for every good and bad day. Her hair yesterday and today is really starting to come out. I cut off about 4-5 inches of hair today. I had the privilege of watching our research nurse coordinator present the girls case at the 2nd Annual International Association of Clinical Research Nurses Conference. He did a marvelous job. I have noisy neighbors at the Inn on both sides of me. This makes me tense. The noise went on far too late last night, so pray with me that it will be a more peaceful evening tonight, and I can get the rest I need. Many people come here from out of the country. This place is sorta like a fantasy playland hotel resort to them, and it is a big party with staying up late and running around. Then there is me who loves the facility and the care of the people, but want to experience rest and peace while here. The two clash. This remains a prayer request for me to relax and let God take care of me. I have another grand story to tell but cannot access facebook on my computer at the NIH, so hopefully soon, I can share this goose-bump story, a God story, so powerfully encouraging and hopeful that only He can provide. I love to spread the good and glorifying news of all that He is doing. All I can say is WOW!
Love,
Mom

Monday, November 15, 2010

Day 11

Her counts are still holding. They will be stopping the GSF shots which boost her neutrophils, so they said to expect drops even below 1000 again. If that happens, then shots will begin again. She is glad to have a reprieve because both arms are so bruised from the shots.
She remains having a low fever, but nothing worrisome. They just dropped the IV form of one of the immune suppressive drugs to oral form. The other one already is oral. The once a day IV antibiotic to treat the staph bacteremia(sepsis) will continue and the other is stopping .She could go outpatient on the IV drug and just pop in once a day to change the bag. It does not look like she will be outpatient this week, but every day is a day closer. The key thing is not move too quickly and remain safe in treatment regimes. The multitude of docs finally agreed it was safe to start the IV Cidovofir today after taking 2 doses off. So, she is happy about that. She had started to see the shape of her real fingers after 5 weeks of it and the virus was starting to return with being off. On Thursday, they will check for the first "chimerism" from her blood, no bone biopsy until Day 28. A test for chimerism after a stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue. They should be able to tell the percentage of each cord and Kelsey. They will continue to check this at certain intervals.

More prayer requests, I found out that Tyler is sick at school. He has an ear infection and possibly mono. The doctor didn't test for it, but said if he was still sick in a week, he would. Tyler's throat is on fire, but no strep. He will be home in Muncie this weekend, so pray he gets well, no mono, no getting anyone sick, and most important he doesn't bring anything horrible out here. God can heal the sick. We need to be together for the holidays. I would hate to leave him alone at home. May this not happen.

The previous entries to the blog, the YouTube videos, were to encourage Kelsey. I hope that you can be encouraged to. It was a huge hit here. Thank you guys for doing that. Oh, another fantastic thing happened last Wed. and Thurs. at Taylor University. My mom, with a bunch of friends, took just over 400 swabs to send to Be The Match. It was an awesome show of support. What a sacrificial thing these students are doing! May God Bless them. Thank you mom, friends, and all the people at Taylor University.

I am constantly challenged by all the blessings we receive. The challenging part is the receiving. Feelings of guilt, unworthiness, and thinking others are more needy creep into my thinking. God's kingdom is not about earning and deserving; it's about believing and receiving. I am learning to accept the gifts with an extremely grateful heart. I rejoice and try to find ways to bless others while here. Our God is a God of abundant gifts, may you receive from Him with a grateful heart.

Love,
Mom

Joyful Heart Mix

Joyful Joyful Mix

Sunday, November 14, 2010

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

Thursday, November 11, 2010

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

Wednesday, November 10, 2010

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

Monday, November 8, 2010

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

Saturday, November 6, 2010

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

Thursday, November 4, 2010

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

Tuesday, November 2, 2010

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