Sunday, June 28, 2009

Today is better. Christi is feeling good, and we took her in a wheel chair over to the Truett Cafeteria where she watched us eat a late breakfast. Since I have been massaging her feet, some of the swelling has gone down. Christi's friend, Renea, who lives near Huntsville, Texas is coming to see her this afternoon, so she is looking forward to that. Very little, if any, bleeding today. Blasts still zero, as is everything else. We expect her blood counts to start up in about another week, then the DNA tests to see whether it is her system or the donor's which is taking over. All in all, it's been a good day so far.

Layton

Zero blasts, days 8&9

Friday and Saturday have been challenging for Christi. She is receiving blood and platelets almost constantly because her counts are zero. Her feet and legs are swollen from all of the fluids that she is getting, so they have given her lasix, and she spends much of the day on the potty.
Please, God, heal Christi...she is tired and frustrated but is not giving up! Help us, her family of caregivers, to continue our vigil over her which we know is paramount in her will to survive. We seek your will...

Marcia

Zero blasts, day 7

Christi had a really good day today, beginning with the news that her blasts are still at zero. Early in the afternoon, she was able to drink and eat very small amounts without getting sick, and she was quite pleased with herself!
However, as has been the ritual, her nights aren't quite as good as her days. I'm sure most of you can relate because it's the same with anyone who is sick...the evenings and nights are when fever kicks in, nausea returns, and overall aches and pains seem to enjoy the fact that we're just not going to get much sleep tonight! Bring on the pain/nausea meds!
She did get a special visit from Holli and her boyfriend, Clay, who (per Christi's request) brought a dish of chicken and dumplings! I totally enjoyed sampling the dumplings, but Christi chose to wait until tomorrow when her tummy isn't so rumbly.
Good night, friends...gotta catch a few z's while she's snoozing!
Marci

June 24th - better today

After two days and nights of intense pain, which appear to have been caused by a kidney stone, Christi is considerably better today. Her blood counts are still practically zero, but there are no leukemia blasts in the peripheral blood. We're anxiously awaiting the blood counts to start up, and when they do, the doctors plan to do a DNA test to see if the new cells are from the stem cell donor or from Christi. If they are only from the donor, that may mean that the transplant was not a failure after all.

There is no projection on when she might get out of the hospital, and since this is the 14th week of continuous hospitalization, it's beginning to get rather old. We hope things have improved within the next two weeks for her to go home. We'll just have to wait and see. Someone continues to stay with her around the clock, and that has not been too bad as there is a chair-bed in the room which is pretty confortable.

We still covet your prayers that she will start to produce good blood cells and be in remission.

Thank you all for your cards and notes. Christi is now feeling like reading them.

God bless you all,

Layton

Zero Blasts, Day 4

As most of you know Christi's transplant failed, and we were given very dire news. One of the doctors suggested a new treatment drug, mylotarg. Christi has been given three infusions of this drug which is to target cd33 leukemia cells,the kind Christi has. We are to wait until Wednesday or Thursday of this week to see if the treatment will work. We are again in a wait and see situation.
I am writing this tonight to ask for your prayers that the donor cells will start working under the mylotarg. They will do a DNA
test to see if it is working.

Thank you for your love, your prayers, the many cards and the terrific support that we have received during this time.
We continue to rely on Tom and Estella Lyon's generous offer of their condo. It has given us a haven for much needed rest.
Tonight we would ask that you again contact your prayer chains that they may send prayers to God on Christi's behalf.
With much love,
Melba

Post Mylotarg, Zero Blasts Day 3

Not much change...Christi has gone 3 days with ZERO leukemia blasts. Penny reminded me tonight that this hasn't happened since she finished her first chemo back in November! Her numbers are all near zero, meaning that she has no immunities AT ALL. We pray that she stays immune to anything that may find its way into her body and wreak havoc. Each day is a gift.
Marci

Mylotarg, Days 8&9

On Day 9, Christi's blasts have been blasted to ZERO! Yes, this is absolutely great news, but will they stay blasted? That's the million dollar question right now, so we wait.
Today was a little bumpy for Christi. She didn't eat or drink much and talked about going home. We patiently tell her to hang in there. Since her counts are basically at rock-bottom, she has little energy and just sleeps. That's fine with me! Sleep it off, little sister, and maybe you'll wake up to a healed body, God willing!

I hope you'll continue the wait with us as we pray for a miracle.
Marci

Mylotarg, day 7, the final dose

The past few days have us almost ecstatic although we are also holding our breath. Christi's "blasts" (bad stuff) have gone from 71% to 2% of her white blood cells. The mylotarg is doing its job. The doctor said that we have to sit back and wait for one of three things to happen:
1) her own body to produce its own good marrow/blood/etc
2) the donor's stem cells to do what they are supposed to do--cure her
3) her leukemia will come back
We like options 1&2. (don't you?!)
Marianna spent Sunday and Monday night, which were a little rocky, then Mom spent a better night on Tuesday, and it's Penny's turn tonight.
Two very dear, long-time friends from high school, Sydney and Robyn arranged to visit Christi today, and she was happy to see some new faces. I'm sure that after 13 weeks in the hospital, she has heard every story that her family has ever told and welcomed the change!
Afterward, Penny and Christi WALKED (pushing the IV, of course) from her room in Collins hospital to the Roberts hospital atrium and back! That was a huge feat in itself since just walking down the hall has been exhausting! It's way more exciting than seeing a child take its first steps!
Friends, thank you for being faithful followers in our blog and faithful in praying for Christi. Your presence has been a comfort to us, and your prayers uplift us 24/7.

Marcia

Plan 'B'; Days 3 and 4

I had the pleasure of spending most of the weekend with my best friend and wife, as she continues to be a relentless warrior in her fight against this disease. I am still in awe to see her remain happy and bright, even though she doesn't feel very well. Her spirit has never failed during this whole adventure, and everytime I'm around her, God touches my heart, and lets me know that He is not more than a whisper away, watching over our situation.

We started the weekend with the handoff from Penny on Saturday afternoon, after a near terrible Friday night, caused by the after-effects of the 1st dose of Mylotarg. Christi will receive 3 doses - one each on the 1st, 3rd, and 7th days. Neither Penny nor Christi got any sleep at all, and it was nothing but tough on both of them. Fever set in, along with nausea, a bladder infection, and other unmentionables that are probably best left out of this forum. Like Christi's brother Gary said, "The good news is that the Mylotarg is working, and the bad news is that the Mylotarg is working !" We knew it was going to take a toll on her, but it's not always pleasant to see. We just have to keep telling ourselves that the chemo, or in this case, the antibody, is doing its job. Anyway, Penny was glad to get home and start a well- deserved evening of rest and relaxation. God bless her for all she has done for us.

My afternoon started by 'firing up' the DVD player to watch the movie 'Fireproof' - a movie I recommend, starring Kirk Cameron. Christi said she'd like to watch it, but I think she only made it through the Titles and Credits at the beginning of the movie, which I well understood, after the night she'd had before. Her vital signs and temperature were being closely monitored by our nurse on duty, Sarah, so she had small breaks in her rest every 15 - 30 minutes. I also had a visit from Dr. Hobbs, who is from the Palliative Care team - it nearly broke my heart to hear what she had to say, but their team provides an excellent service to help move on and try to insure a person's legacy. We talked for a few minutes, and I got her card and told her I would call her back. I have to say that I just wasn't ready to move in that direction, but I know I will have to. It is not speculating 'the end', but will help us with some loving preparation just in case. The rest of the day was somewhat uneventful, except that Sarah, our nurse, realized that everytime Christi needed to go to the restroom, she was over-exerting herself in her trek to get there, and nausea would set in when she got back in bed. So she gave Christi some nausea medicine that seemed to help a great deal. Saturday night had some challenges, but not near what was described as Friday's Fiasco. She had a high fever of 103.8, and the nurse came in quite often to check on her. Christi slept, but not that comfortably, and I woke up everytime she went to the bathroom, just to make sure she was okay. They are giving her a good amount of fluids to keep her system flushed, and it keeps her going to the bathroom quite often.

Sunday is a whole new day - she seems to feel pretty well, and things are looking good to start off the day. Her blood counts are showing that the Mylotarg is doing it's job and that's all we can ask for. Her leukemia blasts went from 72% to 60% which is what we want to see. Her white blood cell count went from 8.4 to 1.4 which shows a significant improvement as well. Gary and Penny came to the hospital about 10:00 am, and Gary and I had the pleasure of spending about 10 minutes talking to Dr. Piniero, about the possibilites of Mylotarg, and he indeed assured us that there is hope, that this has a 33% chance of working. It may sound slim, but at this point, we will take anything. He told us that this will not cure her, but it could put her in a position of biding time to get her back to health to withstand more treatment. He also said that it could possibly kick start her immune system to do the job it is supposed to, or even possibly rejuvinate the transplanted cells. The 3rd possibility wasn't one I wanted to hear, so we'll keep praying for the first 2. The rest of the day was pleasurable for both of us. I noticed that Christi seems to be breathing better, and her speech has gotten a lot better, indicating that her mouth and throat are healing. She also asked me to go and get her a Burrito Supreme from Taco Bell WITH NO RED SAUCE. She took a couple of bites of it, and couldn't stand any more. Oh well, I'll take that couple of bites. I need to find a way to get more food in her. She's getting fed interveniously, but she needs to eat real food. The doctor said eating and getting out of bed is important to her recovery. Later on, we went for a walk to the Family Meeting Room, and sat for a bit, just for her to get out of that room. On our way back, Marianna walked in with a big smile on her face, and ready for the shift change. She was glad to see that Christi was out of bed, and seemed to be doing so well. At that time, we also realized that Christi's speech was getting better as well, knowing that her mouth was healing. Anyway, I handed off with a few hugs and kisses with Christi, and left them with a DVD of 'Young Frankenstien'. I hope my little sweetheart made it through more than the first 5 minutes ! Keep fighting Christi - I'm so proud of you for the showing us the determination of how to fight big battles !

Her Loving Husband,
Rick

Plan "B" Day 2

Whew! What a roller coaster ride we are on! Today Christi is feeling pretty lousy from the Mylotarg, but that is to be expected. Dr. Piniero told us that nothing has changed since yesterday, meaning her leukemia didn't go up OR down, so that is a good thing. We'll take ANY good sign! He's taking her off the pain meds and putting her back on some oral meds, another good thing since she can swallow. Last night she asked for a "burrito supreme, no red sauce," and Gary, Penny, and Holli were more than happy to oblige! She ate about a fourth of it after Holli fixed her a "burrito pudding," and she drank some Dr. Pepper.
So today, mom & dad (Melba & Layton) are here again, and we await new results from Plan B, Mylotarg. She will get another dose on Sunday and then again on Wed.
Thanks for checking in!
Marcia

Day 22

Today, Thursday, June 11th, Christi began receiving the Mylotarg which we hope that will begin to knock down her leukemia blasts. Her white blood count will begin to go down so she will once again be very suseptical to infection. We will resume wearing masks when we are in her room to prevent infection. Christi seemed to feel pretty good today and walked down the hall and sat with Marcie, Gary, Penny, Holly, Melba and me for about 45 minutes this evening. Now she is receiving a bag of platelets.

If the Mylotarg is successful, Christi may be able to go into remission long enough for a second stem cell implant in a few weeks. There is no guarantee, of course, but it is our best great hope. The doctors say that it is only effective against the type of leukemia which Christi has with about a 1/3 success rate. We'll take that.

Layton

Wed. Day 21

I was prepared to give a gloom and doom report because the Grim Reaper (Dr. Vance, no personality or bedside manner) told us last night that they have done all that they can do for Christi. He said that her leukemia is so aggressive that the transplant didn't stand a chance.
BUT today we have a glimmer of hope. Dr. Piniero came in today to explain a drug called Mylotarg (google it if you are interested to know more). The purpose of this drug is to suppress the leukemia, but it's not chemotherapy. There is a 33% chance that it might work. If, in fact, it does work, she would have to undergo another transplant. This drug is not a cure, but it may put her into remission until more stem cells can be harvested from Hilda in about 5 weeks or so.
This morning, however, she is running 101.4 temperature, and they have done tests to see what's going on.
I read aloud to Christi from the Bible today...my favorite passage, Psalm 139. Check it out sometime.
So here we are again in the family room, just being a family, hoping and praying for a miracle. Christi's faith is unbelievably strong!
Blessings on all of you, our friends and family!
Marcia

Day 18/19

Not so good news...leukemia is still present, and we are waiting for the doctor's new plan. Christi's throat is still unbelievably sore/painful, and she cannot swallow. She is limited to ice chips today. She sleeps most of the time.
Marianna was at Sam's on Monday in OKC and had a "God moment." I had called to tell her about Christi's condition, and she was crying as she was loading her car. A man and woman walked by and said, "How do you like your Buick Enclave?" She turned around, and they saw that she was crying. They apologized, and Marianna explained why she was crying. The lady said, "oh, honey...I had a friend who had the same thing, and her second transplant worked!"

We continue to believe that God can heal her. Pray ceaselessly!

Marcia

Sunday, Day 17 after transplant

Sunday was a day of continued improvement. Christi sipped iced tea, and was able to drink a little chicken soup. She was even able to drink some Dr. Pepper which is probably the best indicator yet that the white blood cells are attacking the throat sores. Blood counts continued to climb again today with her white blood count doubling to a whopping 2.4 (almost 20% of the low normal range). Penny (sister-in-law) stayed Saturday night, all day today, and will stay through tomorrow evening when Marcia takes the next shift. Penny said Christi had a good day, but she is not looking forward to another bone marrow biopsy and MRI that will probably be scheduled for Monday.

Gary

Saturday, Day 16 after transplant

Christi was feeling a little better today as her body slowly, but surely, starts the process of developing new blood cells. She is starting to see improvement in her blood measurements every day. She was finally able to swallow some cold water after over a week without eating or swallowing any liquid. It is still painful for her to swallow, but we expect to see great improvement over the next few days as the new white blood cells attack the sores in our throat and esophagus. Her voice made a lot of improvement today and she was able to talk very well. We haven't heard her speak above a very light whisper in several days, so it was great to hear her again. She is still experiencing a lot of pain, but she is dealing with it bravely, with great determination. We are told that once the bone marrow starts producing good blood cells that cell development will become exponentially faster, and she should be seeing greater, faster improvement.

Our parents, Layton and Melba, have been true heroes who have tirelessly stayed at the hospital with Christi for most of the last three months. They had made plans early this year to take a European cruise June 9 to celebrate their 58th anniversary thinking that Christi would be out of the hospital before the trip. They were making plans to cancel the trip as recently as today, but now that school is out for the summer, and it's much easier for everyone in the family to share in the hospital time, they decided to go. Christi told Penny this evening that she was very glad mom and dad were sticking to their travel plans. She wants them to take a breather and have a much-deserved break away from the hospital.

It was a good day exposing greater hope for tomorrow.




Gary Holt

DAY 15

There seems to be some progress in Christi's recovery. The white blood cell count which has been 0.0 since the heavy chemo,has come up to 0.4. That's not much, but it means that her bone marrow is beginning to make cells. The white cells will recover first, then the red cells, and finally he platelets. The white cells will cause the ulcers in her system to start to heal. It will probably be several months before she can make enough of these blood components to sustain herself without transfusions and infusions. About 4 days ago, they started giving her Neupogen (spelling???) which stimulates the blood production. As was expected, this causes Christi's bones to ache and be very painful. She knows, as we all do, that this is a good sign and something which must be endured. She is receiving pain medication which helps some.

Her mouth and esophagus seem to be a little better, and she can softly say a few words. Christi cannot swallow anything, so she continues to receive nutrition through a central line into the bloodstream. The mucousitis is better, so she is not having to suction her mouth and throat as much.

Over-all, things are looking up, and we pray that her suffering will be relieved soon, and that she can put an end to this hospital stay which has been nearly 3 months this time.

Please continue to pray and send your good thoughts.

Layton Holt (Dad)

Day 14

Christi has had a better day today, in my opinion. She had a pretty good night, just getting up a couple of times to address the mucousitis issue. She has not struggled as much with that today. Her throat hurts but the nurses and doctor agree that her mouth is not as red and angry as it was before, hopefully indicating healing is taking place. The doctor said that her blood should start building up at any time and then she will start to heal.
Rick, Julia, Mother and Daddy all came this afternoon. Rick wheeled Christi down to the family room and she sat with us for about 30 minutes. Christi said she was hungry and tried to eat some banana pudding but couldn't quite get the first bite down. At least she had an appetite. I went with Mother and Daddy to the Lyon's condominium to shower. What a wonderful condo and so great of them to let us use their place. Thank you Lyons!!! I will go home tomorrow and will take Julia home with me for a visit. Penny will stay Saturday and Sunday. Marcia will be here Monday.
Marianna

Day 13 after transplant

I arrived from Oklahoma City about 1 PM today and found Christi battling her mucousitis with the suctioner. It consumed her most of the day, and it makes communication difficult but she can write her requests and sometimes clears her throat enough to say a couple of words. I climbed in bed with her and we prayed. I sang some praise choruses and just enjoyed cuddling. We have all been hesitant to get too close to Christi for fear of spreading germs, but I did have on my mask and gloves. Gary came up this evening and brought some cards from the 7th grade class of one of Penny's teacher friends. Gary and I took turns reading them to her and showing her the artwork on each one. Then, I hung the cards on the wall and they seemed to give a little brightness to the room.
Today, we got a little good news as we learned that she finally has a count of lymphocytes for the first time in a week and a half. The number is 8 and is an indicator that the stem cells are getting ready to produce white blood cells. Hopefully, we will see the numbers grow by tomorrow. When the white blood cells arrive, they will begin to heal her mouth, throat, etc. In the meantime, we hope she will just be able to sleep and be comfortable.

Marianna

Tuesday morning , Day 12 after transplant

Layton and I couldn't sleep on Sunday night, so about 3:00 AM I called her nurse and she said that Christi had been vomiting and had trouble waking due to low oxygen so they gave her oxygen which brought her back around. They have since cut down on the medication so that her sleep will not be as deep. She has lost all her hair, eyebrows, and eye lashes. Her skin is beautiful, but she does look a little "naked".
but beautiful. We fight hard to get her to smile. I got a little smile when I told her about a couple of my adventures. She is getting nutrition through the IV.
When she uses the aspirator to extract the mucous from her throat before she sits up, she doesn't get nearly as nauseous. She had been gagging and vomiting and causing such a strain on her espohagus because the mucous would rise to her pharynx and cause her to gag and choke. When she sleeps, you can hear a gurgling sound that
sounds like mucous rising. The mucous is natural to form and it usually helps with swallowing.
We came in from the lake to stay the night with Christi. Rick and the girls came up and Christi was actually able to visit with them. She was so anxious to see her family. She got frustrated because she couldn't reach Rick. Her cell phone battery was out of juice.
Tuesday morning, we await the doctor. Dr. Fay has been her doctor and we prefer that he stay on, but due to rotation a Dr. Pienero is supposed to take over. Rick and Christi feel comfortable with Dr.Fay, so we will see. We will request that he stay on.
Marianna will probably come on Wednesday and Marcie will come on Friday, I think. She does benefit from having new faces come in.
After talking to some of the other care givers, everyone is in consensus that someone needs to be with the patient during this time, because so much comes up. Also, it gives the patient a sense of comfort and it relieves some anxiety. Twenty-four hr. care may not be necessary, but several hours during the day does help.
Our comfort and well being comes from all your prayers and concerns. Christi has appreciated the cards. She asks that you keep praying "hard" as she has faith that prayer will pull her through. Your prayers help to sustain the family, too. Thank you. May God bless each of you.
Melba(The Mom)