Dialysis is an awesome filter

Kristy had the portable dialysis machine in her room early today along with the portable dialysis nurse, a very nice nurse named Billy. He carefully attached the "in and out" tubes to her and the machine, which purred to life with a huge pump and a fine filter, looking very much like the one we use on our motor home (imagine that! :) ). Immediately, the red blood flowed out of her, through the filter for cleansing, into the machine and then the clean blood flowed back in to her. Billy was very good at explaining the process and he stayed by her side, monitoring her the entire four hours of the dialysis. It was comforting to see him stay and monitor her so closely. They removed four liters of fluid from her yesterday and four more liters today. Billy indicated this amount is in the "moderately high" category. Her color was much better after the awesome dialysis machine did it's work. What a wonderful, life saving device this invention is!!

In addition, a personal care partner/sitter was assigned to Kristy-- Dianna who is studying to be an oncology nurse. Dianna will be a wonderful nurse....she was terrific with Kristy. She was also by Kristy's side all day, except for a brief lunch break, during which she was relieved by Robin. Her duty nurse, Lisa, was in and out constantly as well as the Leukemia doctor and his team of five and the Nephrology doctor and resident. She has been well attended and cared for!! For this, we are very grateful.

I arrived in Ashland about 8 PM last night and stayed at KK's house, then headed for the hospital early this morning and spent the day here with Kristy. (KK is very tired and truly needs some rest, so hopefully she can get a little break now) She is indeed, very sick, but she is a fighter and they have got great things going on for her, so I know she will be much better tomorrow. Dr. Chung, (lead Chemo Dr) was pleased with the way she looked today and saw improvement over yesterday.

So ya'll keeps those prayers coming and thanks so much for your encouragement, we are all grateful!!

(Posted by Molly 10/30/08 4:30 PM)

Things Are A Little Better

Well I didn't get to post last night as I fell asleep. Kristy got fluid on her lungs and that was causing the pain her rib cage and chest areas. They had given her lasix and it had pulled too much fluid and with all the meds she had been getting her kidneys had shut down. They think this is a temporary measure and that everything should get better. She was doing a little better when I left. Her husband, Chris, was with her when I left and Molly(my sister)is with her today. Molly said she is talking and answering questions. She should show more improvement today. Either Molly or I will post a new blog this afternoon or this evening. Please keep praying for Kristy; it is very hard right now on all of us.

Things Went from Good To Worse

Well I didn't leave any news yesterday so I will try to update now. Kristy called me at 6 am yesterday and asked me to come over. So I got there about 8 and she was in a lot of pain. The pain was mainly in her left chest and back and lower down. They did 2 ex rays and the doctors couldn't see anything wrong to be causing the pain she was having. Then she wasn't putting out any urine. This was getting serious. I helped her get a shower and that seemed to help her feel a little better but the pain was the same if not worse. The Docs had ordered a ultrasound for her kidneys. I left at 6 and she seemed a little better. I took the day off and came today and stayed with her. They said her kidneys were not putting out anything and she would have to be put on dialysis machine. That was before lunch. It is now 3:15 and they put in another port and brought in the dialysis machine. So I guess they will start that soon. They said she also had some fluid in her lungs and this should help that too. I am sitting here watching her and she is very restless and isn't responding too well. All of this should improve after the blood cleaning. Well they are here now to do that so I will let you know more later.

The Third Day is a Bad Day for BMT

I talked to Chris(Kristy's husband)he is at the hospital with her today. The nurse had said that the 3rd day would be worse than the first 2 days and now we know what she means. Chris said that Kristy lip is swollen, her throat my be swollen, and that her chest hurts and she is sick in her stomach. They did an EKG and her heart is okay. Kristy has had to have a IV drip for a bunny rabbit virus. So if any of you have bunny rabbits remember this. If they pee on you it causes a virus to remain hidden in you. (Kristy had a dwarf bunny years ago) And when your immunity gets down the bunny rabbit virus comes out and causes problems. So they have to treat or prevent this virus from being a problem. So she can't eat or swallow very well right now, but in the next couple of days this should be better. They have been given her morphine for pain and she has reactions to morphine so they have to put her on another one that is comparable. So right now she is very miserable. But the doctors and nurses say she is doing as is expected. Just keep praying for her. I will update tonight after I get home from seeing her.

Prayer in Time of Trouble
Lord, in every need let me come to You with humble trust saying, "Jesus, help me."
In all my doubts, perplexities, and temptations, Jesus, help me.
In hours of loneliness, weariness, and trials, Jesus, help me.
In the failure of my plans and hopes, in disappointment, troubles, and sorrows, Jesus help me.
When others fail me and Your grace alone can assist me, help me.
When I throw myself on Your tender love as a Father and Savior, Jesus help me.
When my heart is cast down by failure at seeing no good come from my efforst, Jesus help me.
When I feel impatient and my cross irritates, mc, Jesus, help me.
When I am ill and my head and hands cannot work and I am lonely, Jesus help me.
Always, always, in spite of weakness, falls, and shortcomings of every kind, Jesus, help me and never forsake me.
Amen

When Our Burdens Get Too Heavy

Sometimes our burdens just seem too much and you think you can't handle anymore, but I look and think of Kristy and my burden is small compared to hers. I didn't go see Kristy yesterday (Sunday), Allen went to see her. He said she is doing really great. Her mouth and throat are sore, but she is doing good. The nurses keep a close check on her, but they are very pleased with the way she is doing. I'll go over there after work today and will talk to her later this morning. She has been having alot of pain in her left arm. When is she was on the 6th floor at Masey Cancer Center in February her IV leaked out into her left hand so she has lost a lot of use and feeling in it. Everytime she gets chemo or fluids her arm hurts so they have to give her pain meds for that and it gets her a little sleepy. Then when she went to ICU right after the IV leaked out they put restraints on her arm and it was where the IV was and now she has a scar there that just never looks quit right. Now she needs the motivation to start moving around and keep her muscles strong. She gets up and showers by herself without help, but usually someone is in her room just in case she gets light headed. She is still getting fluids and lasix to take the fluid off because she swells up from the fluids. I will post more after I talk to her today and go see her.

About visiting Kristy...

We've heard from several people that they thought Kristy could not have visitors so we thought maybe that should be cleared up a little.
Visitors are welcome and Kristy LOVES to see and visit with people....she's too weak right now to type or listen to her phone messages..she does read some email and the blog, and she looks at her phone list to see who calls, so she knows if you call. When she feels up to it, she listens to the messages.

Here are the visitor guidelines for Kristy on the Bone Marrow Transplant unit:

• If you are sick (in any way), please don't come to the BMT unit
• When you arrive you will don a pretty blue "gown" to wear for your visit; it goes in the trash when you leave
• You can bring balloons, books, magazines, etc if they are new (candy, etc in unopened packages are fine(each piece of candy has to be individually wrapped inside the bag); the children enjoy them, even if Kristy can't :))
• Please, NO flowers, fruits, veggies can be brought in the room
• Fighting the possibility of infection is the main goal, so keep that in mind. If in doubt, you can ask the nurses.
• Please limit visits to 15 minutes
• Remember to bring your parking ticket into the main info desk for "stamping" so you may park for $2.00
• She enjoys visitors IMMENSELY, so please feel free to come see her
• If you need directions to MCV or about the parking etc, please call KK, Ray or Molly (if you need our numbers, just leave us a comment and we'll call you!)

Your kindness, care, concern and prayers are truly appreciated! Please keep those prayers coming!

Big hugs to everyone!

(Posted by Molly 10/26/08)

Thank you, Lord Jesus

Thank you, Lord Jesus, for being with Kristy and her family, Kathryn and her family, and for all of the nurses and doctors that are attending Kristy. Lord, I just pray that you will continue to bless them and comfort them as Kristy goes through this part of her life. I pray that God will be glorified in everything that is done, no matter how great or small, to God Be The Glory. Amen.

With Kristy at MCV

Just thought I would let everyone know that Kristy is doing very well. Last night was really rough but today they are keeping a good watch on her and giving her meds as needed and she looks good and talks good. They kept a good eye on her last night too. She had a shower earlier and is napping right now. She is really tired but that is to be expected. She gets up and walks around and is eating good. The doctors say she is doing really good. Her nurses have been really great and all the people that we have met here have been so helpful. Her friend Judy Jamison came by yesterday and sat with us a while. She is such a nice person and Kristy really thinks alot of her. She brought Kristy a orange and black blanket and pillow that the Varina Ruritan Club and the Bits & Pieces Quilt Club had made. That was so thoughtful of her and all of the women and clubs that make these for the people with serious illnesses. Her blood pressure is down now and her oxygen is fine. They have given her platelets and they may do that again tonight. Will update tomorrow I think I need to go home. Kristy has been napping and her supper will be here shortly. I wish you all could see her and talk to her. She never complains and is always greatly appreciative for everything that anyone does for her. As soon as she is not so tired I will get her to post her own blog. But I will say that all the prayers and thoughts have been so overwhelmingly helpful. You have no idea how hard it is sometimes to keep thinking positive and not turn away from good thoughts. You really want to blame somebody for this, but there isn't anyone. It is just something that happened and it can happen to anyone from age 2 months to 60 years.

Stem cells going in....

Just a little update....talked to KK a little while ago and they received the donor cells and started the transplant around noon today. They were on the second bag around 3:00 and Kristy was doing very well. As of 7 PM there hasn't been any updates, but perhaps KK will bring us up to date tonight.

So this is all good and within two weeks she should get good, healthy cells growing!!!

Many thanks to everyone for your prayers and concern!!

Posted by Molly 10/24/2008

Love and prayers coming your way!

Kristy - just wanted you to know G.L. and I have had you and your entire family in our hearts and prayers for months. I really loved seeing all the pictures on this site. You have a beautiful family.



We have friends also praying for you who always inquire about how you're doing. Hope you've had a good day--we're still praying!



Love,

Brenda

Phil. 4:13

Bone Marrow Cancelled Until Tomorrow

I went to see Kristy today as she was getting a little nervous. Last night she wasn't up to company since all she wanted to do was sleep. By the time I got there the parking deck was full so I went to the valet for the North Building and waited until they had room for me to pull in. You can go in on the ground floor that way and take the elevator on up to the 10th floor. Today I almost had express. Whee!! I go and get my gown. (O the yellow ones are the best. They are cooler)And get my gloves and open the door and she tells me they just told her it had been cancelled until tomorrow. I felt so deflated and I think she did too. So I stayed long enough to straighten up her room and while she was getting her shower the bone marrow transplant team came in to see her. So I got to talk to the Doctor. A very nice gentleman. He said the cells would not be in until this afternoon and they would have to make sure there were enough and that everything matched. I asked him about Kristy in comparsion to other patients as to everything that was happening. He reassured me that Kristy was doing just fine and was right were she was supposed to be. He said sometime one person may take a little longer, but that everything was fine. Kristy is feeling better today, but her stomach was still a little queasy and she is very tired. So I am back at work now and I may not be able to go tomorrow as Friday is a little busy. But we are almost there. Just please keep praying for her. Just ask God to keep an eye on her and let him know how much she is needed here. Eric really misses his mother. He wishes that she hadn't swallow that old bug so that she could come home. His bus driver is out sick too so I understand he has been misbehaving on the bus. So I guess we had better say a pray for him that he quietens down a little.

Just a little more info. Molly will be coming by train to Ashland from Elkhart Indiana to help with Kristy and the little ones. So maybe we can give grandma Barbara a break between us. This blog was set up by Molly in Elkhart RVing and get a few things done to the RV. She had planned on being back before Kristy went in on the 17th but things got slowed up on her end. She had already set their RVing back because our Mother had past away on Sept 8th. So Molly come on home we really need you. You have a way of livening things up with all the energy you have.

Today is not a good day

Yesterday I went and visited Kristy after work. Since they have started the chemo she has been more tired and they give her benadryl to help with side affects so she sleeps more. Her stomach is also upset so she spends alot of time in the bathroom. They have been taking her vitals more often too. Her blood pressure was up last night so they are keeping an eye on that. Her last round of chemo was to stop early this morning. We have been text messaging since I am at work and I haven't been getting answers back as quickly as usual. They have put her on oxygen. Usually that is from the chemo and benadryl making her blood pressure go up, her heart rate will increase and the oxygen helps make her more comfortable. This should all settle down shortly. The nurses are very good about looking in on her. The one thing about Kristy is that she doesn't want to ask for anything. She thinks she is a bother. When I'm there we don't talk alot. Of course for those of you that know me, I talk enough for two people. I know her throat hurts and I just try to make sure she doesn't need anything, and I take her clothes home to wash. There are so many things she can not have: chocolate, flowers, pepper, spicey foods. She sold her motorcycle, gave away her rats to Hanover County Pound, and I have her dog and cat. Of course she does not drive anymore so that means she doesn't have her job as a Hanover County School Bus driver. She will not be able to come to my house or any place with animals for 18 months. I believe she told me that she couldn't go out in public for 8 months. I couldn't go to the last bone marrow meeting as I had broncitus and couldn't go near her so I missed things that were told. One thing chemo affects is her memory. She doesn't remember if she has told me something or not.

January until Present Time

Since January 31, 2008, all of our lives have been turned upside down. How could a young and outgoing person like Kristy have ALL? I remember thinking just a couple of weeks before she got sick, that our family had been so fortunate not to have any major illnesses . I would listen to the St. Jude children and my heart would break for the parents and the children. It was more than I could listen to. Never did I think that I would be one of those parents, just to an older child.
We were told that Kristy probably had this since childhood and something made it come out. Kristy was never a sickly child. She loved to swing and swing she did, non stop. Her Grandma Kirby would stand out there and push her and she never seemed to get tired of doing it.

And three wheeler! She and her cousin rode those three wheels so hard. She would leave in the morning and she would come back either riding or pushing. Now at 35 she tells me all the "little accidents" that she didn't tell me then.
Then it was horses. I had a palomino that Kristy was scared to ride so I went out and found one that she could ride. She got on Poco the very first day and took off up the road on that horse and from there it was no stopping. She started riding the palomino, Samantha, in speed events and Poco in western pleasure. She and her sister, Kay Ellen, would ride during the day and then I would ride with one or the other in the evenings and on weekends. Those horses were so muscled up that even the vet couldn't believe how great they looked. She washed those horses every weekend, rode at the local horse shows, and participated in 4-H.

Then she got married and started having children she quit riding and gave up three wheeling.

Last year 2007 she finally had gotten her life all together. All the children were in school and she started driving a Hanover County School Bus. She loved those kids on her bus and really worried about them. She had gotten a motorcycle and loved to ride just to get out and feel the freedom it gave.
Then she got sick with ALL. She almost died the 2nd day at MCV. It went from her arm into her lungs. She went to the trauma ICU and then to the respiratory ICU. She stayed almost a week there and then went back to the 6th floor in Massey Cancer Center. She stayed about another week and then went home. She went back in a week and started chemo. She went in on a Friday and by Sunday she had crashed again and was rushed to the CCU. Then she went to respiratory ICU. For about 9 days she was kept unconsicous and then they started bringing her back. Later they told us that they didn't think she would come out of ICU alive. By this time she had lost most of her long curly auburn hair.(She had cut it short before she went back for the chemo)She had curls around her face and in the back. She never lost it all. So home she went unable to walk or have full use of her arms and hands. She crawled to the couch once we got her up the steps and then we swung her legs up so that she could lay down.So we thought we would have a little break. Then her gall bladder decided it wasn't happy anymore. So to the emergency we went. This was on a Thursday and they didn't operate until Monday. Something about it being a weekend and the doctors would have to take emergencies that came in over the weekend. I thought she was an emergency. Well she had a whole weekend of no food and a lot of pain. By Monday her gall bladder was so inflamed that either they damaged a duct from the liver to gall bladder or it made it all by itself because it was so bad they had to call in the liver transplant surgeon to fix it.. Her one hour surgery turned into 6 hours. She ended up with an incision from her sterum to her right side.
So she had 6-8 weeks of recovery before they could start the chemo again and start planning the bone marrow transplant. The doctors did their part, but there is not enough help on the 6th floor. If we as a family had not stayed and helped her get showers, help get her food containers open, change her bedding and clean her up after accidents she would have been in a lot worse shape. Then she had visits to the Dalton clinic for fluids and blood as needed. They had trouble getting a spinal tap so they put an Omaya Reservoir in her head under the skin. So they used that for putting chemo in her spine and withdrawing spinal fluid to check it for ALL. The hickman in her chest had gotten infected so they put a pickline in her arm with 2 ports. They just took that out last week and have installed a hickman and another port under the skin on her right chest.
And that pretty much brings us up to date and this is where her bone marrow transplant starts when she entered the hospital on the 17th.
(This post written by Kristy's Mom, Kathryn or "K K")

Transplant in three days.....

Kristy was admitted to MCV on Friday Oct 17th to begin the radiation and chemotherapy for the Bone Marrow Transplant (BMT for short). The schedule is supposed to be two days of complete body radiation, followed by three days of chemotherapy. This will kill all of the living bone marrow cells. Then, she has one day of "rest" and the donor cells are transplanted and the waiting begins.Maybe a simple explanation of the BMT is in order: When functioning properly, the good cells multiply normally and create healthy red blood cells, platelets and white blood cells. With Lymphocytic Leukemia, the cells cease to create normal blood cells and instead create "maverick" cells, that will not do their normal jobs. Think of your bone marrow cells as your lawn; you want only good Fescue seeds to have a lush green healthy lawn, but, those old Crab Grass weeds get in there and mess up your nice green grass. In order to have that healthy green lawn, you've got to use some heavy duty "weed-killer" and kill off all of the seeds, good and bad, then replant with new, healthy Fescue seeds, which will take root and grow lush, new green grass.The Fescue seeds would be the good marrow cells and the Crabgrass will be the Leukemia cells. For a BMT to take place, you must first kill off all the cells (seeds), with Chemo and radiation (weedkiller) in order to transpant new, healthy, donor cells (Fescue seeds). You may go here http://www.leukemia-lymphoma.org/all_page?item_id=5965 to learn more about Leukemia and Bone Marrow Transplants.So the radiation and chemo will kill her marrow cells, until the BMT takes place. There will be no immune system until the donated marrow takes "root" and begins to grow in her bones, so she will be highly susceptible to every type of infection and fungus imaginable (and some that are not imaginable!) For this reason, Kristy will remain in a sterile environment on the Tranplant floor at MCV and has many restrictions on her activities and visitors. "Nutropenic" is the name given to this fragile, immuno-compromised condition.She can't be near any fresh fruits, vegetables, meats, flowers or plants; no animals, dirty dishes, dirty laundry. Of course, if you have the least bit of a cold or sniffles, you can't see her. This is a "simplified" version of the BMT, but hopefully you understand how it takes place.On the day of the transplant, the donor cells are dripped into her Hickman port ( a semi-permanent, direct, intra-veneous line). This is known as Day Zero. The next day is Day One (post-transplant), and so on. The goal is Day 100....usually known as the day you are most likely "home-free"; in between she will battle the constant chills, nausea and diarrhea that accompany the chemo and meds, given to both shore up and suppress her immuno-system; to help it grow, yet keep it from fighting the new donor cells ( a condition known as "Graft Versus Host Disease" GVHD)Hopefully, her hospital stay will be something like a month or so, depending upon how her body tolerates it's new BMT cells. Then, she must return to the hospital every day, seven days a week, for the blood tests which continually monitor how her cells are both attempting to grow their own, new marrow and healthy cells, and to watch for any sign of GVHD, so the immuno-suppression can be carefully balanced. It is, indeed, a precarious balancing act.
(This post written by Kristy's Aunt Molly)