History

Journal History

Friday, September 19, 2003 11:28 AM CDT

Hi everyone,
Rachel is doing fairly well. We had a great time at a Colorado dude ranch the first week at school, thanks to a big donor to U of M. Rachel then started middle school a little late, went 4 days and then came down with a very bad cold that turned into viral pneumonia. She is on the road to recovery and has been back at school for a few days now. We have had no esophagus problems and are scheduled to go to get another dilation in a couple of weeks (it has been a couple of months since her last one). Also, we had another answer to prayer in that she grew 3/4"! That is very exciting. We are still trying to get some weight on her which has been a struggle and are currently giving her an appetite stimulant. She is also due to get her new retainer on Monday and she is to wear it all the time except when she brushes her teeth. So pray that it will be comfortable and she will get use to it quickly! Thanks so much for your continued support and prayers.
Please pray:
1. that her new retainer will be comfortable and she will get use to it quickly.
2. GVHD will go away.
3. She will continue to grow and gain weight.
4. Against infections.
Thanks!
Jenni Swink

Tuesday, July 22, 2003 11:36 AM CDT

Hi everyone, (I have added a prayer request as of 8-7-03)
I'm sorry for the delayed update! Morgan's dad passed away suddenly in early June which took a toll on everybody. Everything here is going about the same with a few improvements. Rachel is still getting the dilation surgeries now every 4-6 weeks. Her swallowing has improved. We did not end up having the stomach flipping surgery. I was already to say go ahead and then the surgeon saw improvement in the strictures and recommended that we wait and see what happens and there has been slow steady improvement ever since. Her mouth and eyes are still pretty involved with Graft vs Host disease so she is still on the immunosuppresants and maintenance antibiotics. She was able to get started on growth hormone shots in April but has not responded so far. She is still underweight (52lb) and we are still feeding her at night through her g-tube. The growing doctor says we need to get her weight on before she will grow, so we are now going to some bolus feedings during the day. She is eating pretty well during the day. The bmt doctor says the gvhd takes calories that go nowhere so she needs extra calories than a normal person her age, so it is good that we have the g-tube to maintain and increase her weight as needed.
Rachel was able to attend Spring Hill camp, an overnight Christian camp for 5 days and had a blast, but came back skinnier and dehydrated! So we are working her back up now. It was great for her to experience normal kid things. We are also going for clinic visits now every 4-6 weeks which is great! Her blood counts are incredible. Thank you so much for your prayers and concern for us! Please continue to pray:
1. Healing of all Graft vs Host disease.
2. Healing of esophagus/stictures.
3. She would start growing.
4. We would be able to keep her weight up.
5. She would continue to eat more and more.
6. (Added 8-07-03) Please pray as we look for the best solution to replace Rachel's 2 lost teeth. Her other teeth are moving all around as there is nothing to hold them in place (the other retainer has been irritating and difficult for Rachel to wear).
Thank you so much!
Jenni

Thursday, April 3, 2003 12:15 AM CST

Hi everyone,
Well we have continued the dilation surgeries every 2 weeks to keep Rachel's esophagus open. She has had no problems with food getting stuck and is eating about 600 cal/day. We are giving her 11 hours of liquid food through her GI tube every night and thus her weight is now 54 lbs. just what it was when we went in for transplant last year. We are also trying to get back on the growth hormone after being given the ok by the BMT doc's who are pleased with her progress. The biopsies all came back negative for GVHD but as they are not completely reliable the BMT docs think her strictures were probably initially formed by mild GVHD since they also see it in her eyes and mouth. And this was made worse by her extreme acid reflux. So they are strongly recommeding that we do a laproscopic surgery called Nissen fudoplication which is basically flipping the stomach around so that the valve between her esophagus and her stomach will only open 1 way. It is very successful in curing acid reflux but there have been some problems with stretching and coming undone. I have not been excited about getting the surgery done, but now they are saying it needs to be done sooner rather than later as these surgeries every 2 weeks are just maintaining the situation not getting us ahead. All said though, Rachel has been feeling great, acting very goofy :-), going to school most every day except for clinic visits and surgeries and is getting very excited/nervous about going on to Middle school next year. We just received an update from her teachers and she is getting mostly B's, B+'s and an A-, so we are very pleased with her schoolwork. She is extremely organized and as the teacher told us, knows what they will cover next on her own and is able to work ahead!
On another note: We are going to Phoenix over Spring Break next week to be with my mom as her husband of 8 years suddenly passed away 2 weeks ago from a massive heart attack. She is doing well but I know would appreciate your prayers. Thank you for your prayers.
Please continue to pray :

For mom Carolyn: to know God's constant presence, will easily deal with paperwork details.

For Rachel
1. Complete healing and especially of her esophagus, mouth, eyes.
2. Insurance would approve growth hormone with no hassles.
3. Success/wisdom regarding Nissen Fundoplication surgery.
4. Healthy good trip to Phoenix with lots of fun!
Thank you so much!

Friday, February 7, 2003 2:29 PM CST

Hi everyone,
Well we have had an eventful week. The dilation surgery was very successful as they were able to open her esophaogus to almost normal size. The Ph probe placement shows that she does have significant acid reflux, so I am still waiting to see what the doctors think about the treatment for that which may hopefully include getting off of the steroids and immunosuppresants. Since this may indicate that she does not have severe graft v host disease! Which is very good news. She is down with a stomach virus now but seems to be recovering like a normal kid. We have been in an out of the hospital the last couple of weeks and hope to have a few weeks of peace! She was able to go to school Wed. and Thur. to take the MEAP which seemed to go fine. Thank you so much for your prayers! Please continue to pray:
1. Wisdom for doctors decision on getting off of immuno-suppresion.
2. Ability to get off steroids soon and get back on growth hormone.
3. Potassium levels to stablize.
4. That she would be able to go an entire week to school.
5. Peace and joy to reign in the Swink household.

Sunday, January 26, 2003 at 03:29 PM (CST)

Hi everyone,
We had a rough week last week. We went in for our normal Wed. checkup and found that Rachel's potassium level was critically high which got everyone very excited. They brought in an EKG which came back normal to everyone's relief. But we had to stay all day and get some medicine that pulls the potassium out to lower her level. And we had to come back Thurs. and Fri. and do the same thing all day. And Sat and Sun, but we could do it at home! And we go back tomorrow to get it checked again. It is slowly coming down. It was caused by the immunosuppresant drug she was on. Needless to say we are off that drug and are going to start on another one tomorrow. Rachel is starting to get use to her g-tube and she is up to 48 lbs! We hope that she gets to go back to school this week! Friday we are having another dilation surgery and placement of a Ph probe for 24 hours (hence an overnight in the hospital) to check to see if she is having acid reflux which can cause strictures. Thank you for your prayers they are working as she still has not even had a cold since the first of the year! Please continue to pray:
1. Quick healing of stomach tube site and belly button(dilation entry site).
2. Successful dilation surgery on Friday so that she can eat more foods with no intubation problems.
3. Courage for Rachel as she has the Ph probe which will go down her nose.
4. Potassium levels normalized and no side effects from new immuno-suppresant drug that will enable us to get off the steroids!
5. Protection from infection.
6. Love and joy to reign in the Swink household!

Sunday, January 19, 2003 at 04:17 PM (CST)

Hi everyone,
The surgery went well. They didn't dilate a lot though. The surgeon said it was a good idea to get the feeding tube put in since he didn't know how she could get anything down her esophagus, he couldn't even get the scope down. So he opened it up some, but wants us to come back in 2 weeks and get another dilation because the stricture(scar tissue) is so tight it wouldn't push back much. We came home Sat. night and did our first tube feeding. She is feeling sore at the surgery sites but has also continued eating almost as much as before so I'm hoping for a lot of weight gain! We are ramping up her food total, so maybe in a week we will be giving her a 1000 calories a night. Hopefully she will be able to go to school on Tuesday. Thank you all for your prayers! We had many answers with the surgery success and she was very brave the entire time! Please continue to pray:
1. Healing, disappearance of strictures with never coming back.
2. Quick healing of surgery site.
3. Ease in transition for everyone with nightly tube feedings.
4. for the whole family, to have celebration times.
Thank you!

Tuesday, January 14, 2003 at 03:37 PM (CST)

Hi everyone,
The surgery is scheduled for Friday, they won't let us know the time until Thursday. We had to have consult with the ped. surgeon last Friday and he ordered an upper GI to make sure the strictures weren't back before he did the surgery. Well the upper GI showed that yes she did have 2 strictures so they have also scheduled a dilation and endoscopy on Friday along with the feeding tube placement. All the BMT docs are in agreement that we should get the feeding tube as these strictures in others usually require many dilations to get rid of them. She still is only eating nachos and brownies but has been attending school all day and coping pretty well, I've been surprised. I will let you know the time of surgery hopefully on Thurs. If not I will give you an update over the weekend. Please continue to pray:
1. The strictures would not come back.
2. Successful surgery on Fri. with no complications.
3. Complete healing.
4. Protection from infection.
5. That Rachel, Morgan and Jenni would be strong and courageous and find things to celebrate.
Thank you so much.
Jenni

Sunday, January 05, 2003 at 05:06 PM (CST)

Hi everyone,
Well, we had a good three weeks and then 2 days after we arrived in Texas for Christmas, Rachel got some sort of stomach virus which kicked in the GVHD again with the mucous and difficulty swallowing. Fortunately we didn't end up in the hospital in Texas and were able to increase the steriods again but she has steadily lost weight and is currently at 42 lbs. The doctors at U of M told us last week we needed to consider placing a feeding tube in her stomach. Morgan and I were initially not wanting to do this but after asking them for a week to try to get her to drink some high calorie supplements with not much luck we are starting to see the writing on the wall. We are due to go back on Wed. and I think I might just call tomorrow and see if we can schedule the surgery. The immuno suppresants are slowly helping her improve but I just don't think it is going to be quick enough to get her gaining much weight anytime soon. Rachel seems to want to get the tube as she has been so frustrated in her inability to eat the foods she wants to. Currently the only things she can get down are nachos, cereal and brownies. She has tried to eat pizza (her favorite food) many times and it just keeps getting stuck. She has little energy and is just not herself. So I think we are all hoping that this will help get her past this more quickly. So please continue to pray.
1. Healing of the GVHD in Rachel.
2. She would get no infections especially stomach viruses.
3. She would be strong, courageous and encouraged, along with her mom and dad.
4. Wisdom for the doctors and success and ease in possible tube placement surgery.
I'll update as soon as we get a surgery date and time.
Thank you so much for going through all of this in prayer with us.
Jenni

Saturday, December 07, 2002 at 06:26 PM (CST)

Hi everyone,
They decided (and we really wanted it) to get on a good dose of steroids to kick this mucous/mouth/swallowing/eye problem. Immediately it stopped the mucous and swallowing problem, which made our trip to California wonderful! At our last checkup on Wed. we decided to get on the Tacro (the other immunosuppresion drug we were on this summer) and to taper off the steroids since they have nastier side effects. The pulmonary function test showed that her diffusion capacity was significantly reduced, leading them to believe the GVHD is also in her lungs and they were very glad we had started back on immunosuppresion. This week Rachel seems to be back to her old self! She has been able to go to school all day and just tonight was non-stop talking. It is incredible to see the difference in her disposition, outlook and attitude. The immunosuppresion leaves her more vulnerable to infection so I still have many prayer requests. We are planning on going home to Texas for Christmas where Rachel is looking forward to beating everyone at 42 (a domino game that is tradition in the Swink household!). Thank you so much for your prayers. Please continue to pray:
1. Rachel would not get any infections.
2. Her lungs would function normally.
3. She would want to run and play with her friends.
4. A servant's heart for Jenni.

Sunday, November 17, 2002 at 01:47 PM (CST)

Hi everyone,
The biopsies came back negative for GVHD and she had a good first weekend, but then the mucous started again on Monday night and has progressively worsened all week. With the worse being Saturday for 3 hours with a total of 2 cups of mucous. So we now know that the mucous is not from the stritures that were in her esophagus. The frustrating part is that the doctors have not seen this as a manifestation of GVHD so they don't really know what to do. After the episode is done, she is able to eat and drink so is not getting dehydrated but not really gaining weight either. As you can imagine it is very frustrating, she can't go to school until 12:00 and is falling farther and farther behind in school. Her teachers have been good in working with us, it is just 5th grade is the very hard year in our district and with this on top of that is making it hard. I am also having to clear my schedule of activities and emotionally it has been very draining for both of us. Our next plan is to have an ENT doc look at her and see if there is anything going on there. If he doesn't fine anything then the plan is to try a burst of steroids. Please pray:
1. Healing for Rachel.
2. Rachel will be strong and courageous.
3. Wisdom for the doctors.
4. A servant's heart for Jenni.
Thank you.

Thursday, November 07, 2002 at 12:29 PM (CST)

Hi everyone,
The procedure went well today, no teeth lost for one! :-} They found 2 strictures in her esophogus and were able to open them up some. They also took some biopsies to try and determine what caused them to occur. Those results won't be back for a week. The GI doc did say that he didn't see anything in her esophagus or stomach that were alarming. So we are all hoping that this will be it. She has developed dry eyes, probably due to mild GVHD in her eyes and she has mild GVHD on her tongue and possibly going on in her liver as her numbers are elevated again. The docs still think they are mild enough to not go back on immunosuppresants and are thinking her body will eventually sort itself out. Thank you for your prayers. She is up eating now, bigger bites that before! And they are talking about letting us go home tonight. Please continue to pray:
1. GVHD would go away in all areas.
2. She would eat and gain weight.
3. THe growth hormone could get started safely again.
4. Joyful attitude in Rachel as she takes many medicines.
Thank you!
JEnni

Wednesday, November 06, 2002 at 11:34 AM (CST)

Hi everyone, we were admitted to the hospital yesterday for some Upper GI studies. Rachel had a barium swallowing test done and we have seen there is a very severe stricture which is where the esophagus is constricted at one point. So we are scheduled to have a enodoscopy tomorrow. They act like there is a procedure that can be done to enlarge the stricture, please pray that the endoscopy and that can be done at the same time, during the same intubation as she is very difficult to intubate. Also, pray we will know
what caused the stricture, it could be Graft v. Host disease or from the radiation she had 7 years ago. They have determined that she has graft vs. host disease on her tongue and possible her right eye, but seem to think that is mild and the body will eventually work it out on its own.
I am not worried, as Rachel is feeling well except for this mucous stuff, it is worse in the morning, then she is
playing in the playroom and we are going to have an afternoon outing to the bookstore. To recap the prayer requests:
1. Endoscopy and enlarging procedure can be done together.
2. No problems in surgery or intubation.
3. Cause of stricture found and able to be opened with just one procedure.
4. Peace for Sarah, Derek and Morgan at home.
Thank you all so much!
Jenni

Sunday, October 20, 2002 at 09:14 PM (CDT)

Hi everyone,
Yes, life has returned to almost normal. Rachel started school on time and is enjoying it immensely. She is playing the viola in orchestra, in chess club and in a leadership training class at church for 4th & 5th grade. For Halloween she is going to dress as a Jeanie (I Dream of Jeanie). She has had a few things going on lately and we would appreciate your prayers! Rachel has had two liver numbers that have been elevated for a couple of months and a little difficulty swallowing lately. But she has also had a cold, that can also make the liver numbers go up, unfortunately almost every time we get a blood test! Anyway, there is a little concern that she may have some mild graft vs. host disease going on in her liver and possibly esophogus. We are following it closely and due to get another blood test on Wed. I so appreciate your concern and continued prayer.
Please pray:
1. that she would get over this cold and not develop anymore.
2. that her liver numbers would normalize.
3. that she would eat more and have no trouble swallowing.
4. we would be able to start up on growth hormone soon.

Thank you again for your prayers. I have learned time and again, God answers our prayers.
Jenni

Friday, August 23, 2002 at 02:47 PM (CDT)

Hi everyone,
I am so sorry for not updating sooner! Last week we were given the good news that Rachel could get off the immune suppresant drug and could start school! So we have been busy getting ready for back to school! Also, we were chosen to be filmed for a fund raiser that Borders and Make a Wish are doing for the Univ. of Michigan. Rachel and I played our parts yesterday and we both felt very special. They filmed Rachel and Sarah playing in the play room and we are all excited to see the final product at the fund raiser on Oct. 4. All of Rachel's blood counts are in the normal range. Her liver numbers have come way down but are still elevated slightly. Rachel, Sarah and i had an 8 hour shopping trip and Rachel had so much energy, Sarah and I kept asking her if we could sit down and rest! It has been wonderful to see Rachel so full of energy. We have not seen these levels of blood counts since before the neuroblastoma when she was 3. The doctors are still debating when we can start back on the growth hormone. But we are now going for check ups only once a month now! Thank you so much for your continued prayers!

1. Rachel would stay healthy with no graft vs. host disease.
2. Rachel's liver numbers would continue to come down to normal.
3. Rachel would work hard in school.

P.S. How wonderfully normal those prayer requests sound! She has come along way and we have seen the Lord answer so many of our prayers. Thank you!

Thursday, July 25, 2002 at 12:43 PM (CDT)

Hi everybody, We had a wonderful vacation at Kiawah Island! It was so wonderful having the whole family out together. We saw 2 alligators, canoed in a marsh and saw live clams spitting water and many other things! Rachel's favorite activity was swimming in the pool. She also loved have 2 afternoons in the Kamp Kiawah where they made crafts, swam, tye-died shirts and had lots of fun! Yesterday we had our check up at clinic and were hoping to get off the immuno-suppresive drug, but 2 of her liver numbers were really high. They said it could be because of the cold she had last week or it could be liver graft vs. host disease. We are to get rechecked in 2 weeks to see if it has resolved. If not, there is a whole other process involved and returning to school in the Fall may not be an option. We are trusting that it is from the virus and appreciate your prayers that it will resolve. All her other counts were good, with her hemoglobin up to 10.4, platelets at 234,000 awesome!, and white count the same. She is feeling very well, looking great with her tan and has more energy! Thank you for your prayers. I will update again in 2 weeks when we get the blood test back.
Please pray:
1. Liver values would be normal.
2. Can get off the immuno-suppresive drug.
3. She would develop no chronic gvhd.
4. She would be able to go to school in the Fall.
5. We would not be anxious but trust in the Lord.
Thank You!

Wednesday, July 10, 2002 at 07:41 PM (CDT)

Hi everybody! We had a wonderful day today! Thank you for your prayers! Today was one of those days you want to soak up and savor every minute! Rachel's surgery went very well. Her platelet count was 252,000, which we have not seen at all since before the neuroblastoma diagnosis when she was 3! Her hemoglobin was up and her white count was up (both still slightly below normal). The plan is for her to be able to swin on Sunday! So we are off to Kiawah and all are looking forward to it. They also did a bone marrow biopsy, the preliminary results will be back on Friday which should be fine, but the real test is the chromozonal study which takes a month to get back. That is how they made the MDS diagnosis in the first place. She has a some pain around the bone marrow biopsy site but hopefully that will lessen tomorrow. Please continue to pray for her! I hope these last two updates have put smiles on your faces!
1. Travel safety to Kiawah and a fun, relaxing, rejuvinating trip.
2. Rachel would have no pain around her bone marrow site and no problems at her central line suture site over the week.
3. Protection for Rachel's organs, especially kidneys and from infection.
4. She would develop no chronic or acute GVHD.
5. Her white count and hemoglobin would normalize.
6. She would eat and drink more. - ANSWERED - since we are off the fluids! (I would still like her to eat more, she is still so skinny!)
7. We would be able to get her central line out in time to go to Kiawah Island in mid-July.- ANSWERED!
8. Her central line surgery would go smoothly on Wed. - ANSWERED!

Friday, July 05, 2002 at 08:07 PM (CDT)

Hi everybody! Well, we are having prayers answered right and left. Rachel's counts were up some and we got the green lights to go to Chicago! We just got back and all had a wonderful time. The girls and I especially loved our American girls outing, in which we visited twice! We saw the play and then went back the next day on a major shopping spree ( I knew it was not a good decision, for Morgan to send us there without him!) Sarah got her first doll, Kit and Rachel had her doll's hair smoothed out and put up and so of course we had to get the doll salon chair and the hair care kit. The girls have not stopped spritzing and combing their hair since! On to the next answered prayer, we are off to Kiawah Island on Friday! Rachel is getting her central line out on Wed, along with her ear tube and a bone marrow biopsy, just in time for her to be able to swim next week! God is so good! Thank you so much for your continued prayers! Please continue to pray:

1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize and we would be able to go to Chicago, next week.- ANSWERED.
4. Rachel would be joyful and recognize God's love for her.
5. She would eat and drink more.
6. We would be able to get her central line out in time to go to Kiawah Island in mid-July.- LOOKS TO BE ANSWERED!
7. Her central line surgery would go smoothly on Wed.

Thursday, June 27, 2002 at 08:47 PM (CDT)

Hi everyone,
I'm sorry for not updating sooner. We got very good news last week at her check up, all her blood counts were up and they took us off the fluids and said we didn't need to come back for a month, if you can believe that! But we got a blood test on Tues. to make sure sher was not getting dehydrated and saw that while she was not dehydrated, all of her blood counts had dropped. It could be the oral antibiotic that we started back up on 3 weeks ago. So they want to see us in clinic on Monday, since we were planning on going to Chicago on Tues. for 4th of July and do the American Girls thing while Derek is at Spring Hill Camp. We all want to know if her white count will come up enough as it was right on the borderline. Otherwise, she is feeling great, with no infections. She does need to get more exercise. She gets tired very easily and is hot or cold most of the time. Thank you so much for your concern and your prayers! Please continue to pray:
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize and we would be able to go to Chicago, next week..
4. Rachel would be joyful and recognize God's love for her.
5. She would eat and drink more.
6. We would be able to get her central line out in time to go to Kiawah Island in mid-July.

Wednesday, June 12, 2002 at 03:25 PM (CDT)

Hi everyone, Yesterday was a wonderful day as Rachel's hemoglobin was 8.8! This means that she is starting to produce red blood cells! This is what we have been waiting for. Her platelets were up to 189,000 which is normal. Her hemoglobin and white count while coming up are still below normal. So let's keep praying. Everyone finished school today and are we are looking forward to a nice relaxing summer. Oh, also, we saw the endocrinologist (the growth hormone doctor) and she said they are very ready to start back up on growth hormone! This is exciting for us as this will really increase Rachel's energy level. The BMT doc wants to wait until 6 mo out which is July 24 to start. Please keep praying! Thank you so very much! It is a little bittersweet, our good news, as we learned of a little boy, that same day, who was 2 weeks ahead of us in transplant and basically breezed through it like it was nothing, relapsed. For our good news, there is always some other child receiving bad news. If you think about them please pray for emotional, physical and spiritual strength for the entire family and of course for healing.
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize.
4. The oral pneumonia antibiotic would not decrease Rachel's platelets. (it looks like this is the case! another answer!)
5. Rachel would be joyful and recognize God's love for her.
6. She would eat and drink more.
7. We would be able to get off the fluids by the end of June and be able to get her central line out in time to go to Kiawah Island in mid-July.

Sunday, June 09, 2002 at 09:16 PM (CDT)

Hi everyone,
We had a great visit last week, her hemoglobin is holding steady at 8.1! 8.0 is the limit they'll let you get to before they transfuse. We won't go back for 2 weeks, but will get a blood test in between so I will let you know how it goes. She did receive her new tooth retainer. It looks great, but it will take some time for her to get use to wearing it. Today, for the first time, our whole family went to church together. We kept Rachel with us and sat in the balcony which is not very crowded. I think she really enjoyed it. Tomorrow she is going to get to go to her class' end-of-the year party. The doctor's approved it since it will be outside. She is very, very excited as you might guess! The last day of school for us is Wed. and we are all looking forward to it. We are still on reduced fluids and I might see if we can reduce it some more at the end of this week. Thank you so much for your prayers. God has been answering them by keeping infections and GVHD away from Rachel. She played kickball (her favorite game) with the neighborhood girls the last few days and is feeling good! Please continue to pray:
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize.
4. The oral pneumonia antibiotic would not decrease Rachel's platelets.
5. Rachel would be joyful and recognize God's love for her.
6. She would eat and drink more.
7. We would be able to get off the fluids by the end of June and be able to get her central line out in time to go to Kiawah Island in mid-July.

Thursday, May 30, 2002 at 10:02 AM (CDT)

Hi everyone,
We had a good clinic visit yesterday with 2 answered prayers! The first was they decided we didn't need to do the IV antibiotic (the one which always makes Rachel sick). They decided to put her back on an oral and see how she does with that. We were also taken off another antibiotic. The other answered prayer is that she didn't need a red cell transfusion as her hemoglobin was 8.1. It had only dropped from 8.4 10 days ago, which is really good. They also have decided to try and reduce her fluids, so hopefully we can get off of them. We will have to be on the immunosuppresive drug until July 24. Next week we go and get her tooth retainer. But the BMT doc said we can start going to clinic every 2 weeks! But we'll get a blood test in between. So we had lots of good news. If you can believe this, Rachel was disappointed to not get the IV antibiotic as she really wanted to do the craft in the kids infusion room. So we squeezed the craft in anyway and she had a good time. Then we decided to go and eat lunch at our favorite restaurant in Novi, On the Border. Thank you so much for your prayers. Please continue to pray:
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize.
4. The oral pneumonia antibiotic would not decrease Rachel's platelets.
5. Rachel would be joyful and recognize God's love for her.
6. She would eat and drink more.
7. We would be able to get off the fluids by the end of June and be able to get her central line out in time to go to Kiawah.

Friday, May 24, 2002 at 12:06 PM (CDT)

Hi everyone,
Yes, I had a wonderful relaxing trip, thank you for all your encouragement and prayers! Rachel also had a good clinic visit on Monday. Her liver and kidney panels were both normal which was a first since transplant! Her hemoglobin had dropped but not low enough to need transfusion. She is still on the extra fluids and magnesium. We are at Day 120. The school was able to get the technical difficulties fixed with the video system and it is again up and running! I have been trying to plan a vacation to Kiawah Island in mid July (the only time it will fit it, with everyone else's schedule) and now am realizing the need to start praying that Rachel will be off the Tacro (immunosuppresive drug) which would allow us to get off the fluids, magnesium and her central line to come out. It will take a miracle but with God all things are possible! Please continue to pray:
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize.
4. She would not throw up with the IV antibiotic given every 2 weeks. (it will be given on Wed 5/29)
5. Rachel would be joyful and recognize God's love for her.
6. She would eat and drink more.
7. We would be able to get off the Tacro by the end of June and be able to get her central line out in time to go to Kiawah.

Wednesday, May 15, 2002 at 01:09 PM (CDT)

Hi everyone,
The clinic visit on Monday showed Rachel's hemoglobin has continued to drop, her white count and platelets were about the same. But I am thinking that she'll probably have to get a red cell transfusion on Monday. She has a little bit of a cold now, but seems to be handling it fairly well. We had the IV antibiotic on Monday also and we thought we had sidestepped getting sick, as they let us go into the pediatric infusion room. She painted a picture frame the entire time and didn't even realize when they unhooked her that they had been giving it to her! But unfortunately, we got home and when she started eating she threw up then. So we need to keep praying. Her kidney blood panel showed that they were still acting sluggish, so we are back on lots of fluids and the magnesium at night. They did reduce her immunosuppresive drug back to every other day. It processes through the kidneys, hence the reason her kidneys are acting sluggish after being on it for 5 mo. now. Schoolwise, we are having some technical problems with the video system but hope that it will be up and running again soon. I am off to a beach trip tommorrow for 4 days with a good friend of mine. We plan on doing nothing but lay on the beach, read, eat and sleep. I really need an escape and am hoping I can come back charged and ready to conquer! Also, I have noticed a slight increase in eating, but she lost 2 lbs this week! So she is down to 4 lbs below when she went in for the transplant. Thank you so much for your prayers. Please pray:
1. Protection for Rachel's organs, especially kidneys and from infection.
2. She would develop no chronic or acute GVHD.
3. Her blood counts would normalize.
4. She, Morgan, Derek and Sarah would have a good, relaxing weekend with no health problems.
5. She would no throw up with the IV antibiotic given every 2 weeks.
6. Rachel would be joyful and recognize God's love for her.
7. She would eat and drink more.

Thursday, May 09, 2002 at 11:43 AM (CDT)

Hi everyone,
We have passed Day 100 now! I have since learned though that no restrictions are to be lifted until she is off the immunosuppresive drug, which looks to be 2 more months. The clinic visit went well yesterday. Her blood counts were down except the platelets which were up. They have also shown that she now has all donor cells, which is good. The echo/EKG test showed everything with her heart is normal. They have reduced her fluids and taken out the magnesium to see if we can get rid of it all together.
Schoolwise, Rachel is all caught up with her class if you can believe that! She is still loving the video hookup but misses being in her classroom. Thank you for all your prayers! We saw Dr. Ferrara in clinic yesterday and he was again marvelling at how well Rachel is doing. He said that another little boy had developed IPS in his lungs as Rachel did and also responded well to the new drug treatment. But he did add, I don't think anyone has recovered as quickly as Rachel did. We know that it was more than the Enbril at work! Also, in accordance with another answer to prayer, we saw the orthodontist yesterday and she fitted Rachel for a tooth retainer. We are to go back in 4 weeks and get it! Please continue to pray:
1. Protection of Rachel's organs and from infection.
2. She would develop no chronic or severe GVHD.
3. She would eat and drink more.
4. She would not get sick with the IV antibiotic we have to do every 2 weeks.
5. She would have a desire to be physically active.
6. Her blood counts would be normal.

Tuesday, April 30, 2002 at 01:52 PM (CDT)

Hi everyone, Rachel's counts were fairly good. Her hemoglobin had only dropped 1.0 which is pretty good. Her platelets were up and her white count was up. Because of her kidney levels, the doctor thinks her kidneys are being a little sluggish so he reduced her immunosuppresive drug and now we are down to the lowest dose possible. They want to keep her on this for 2 more months. It is when they start tapering this that some GVHD can flare up. But so far so good. The school/home video system has been up and running for a week and Rachel is loving it. Her classroom can see and talk to her and she can see and talk back to them at home. It is almost like she is going to school again. She gets up every morning and is ready in front of the TV when her classmates walk into class. They come in and wave to their video screen and say Hi! She is even working in groups! Now, I'm just concerned about her sitting all day and not getting any exercise. I'm hoping when the newness wears off she will use their music/gym times to do something active. So far she has not wanted to at all. Oh, also I spoke with the orthodontist, in which we have an appt for next week, and she definitely thinks we can give Rachel some kind of tooth retainer. So that was a wonderful answer to prayer! Your prayers are being heard! Please continue to pray:
1. Protection of all her organs, especially her kidneys and from any infection.
2. She would develop no severe or chronic GVHD.
3. She would not get sick with the IV antibiotic we have to do every 2 weeks.
4. She would have a desire to be physically active.
5. Her blood counts would be normal.
6. She would eat and drink more.

Monday, April 22, 2002 at 03:20 PM (CDT)

Hi everyone, today was a good clinic visit! Her hemoglobin was 11.9 which is normal! So maybe we won't have to have a transfusion next week. All her counts looked good and I talked them into getting off the IV fluids, so we're doing a trial run. She still doesn't like many things to eat, but maybe as she gets hungrier, she'll try more things. The school is in the process of trying to hook up a camera in her classroom and one here at home to enable the class to see and talk to Rachel and for her to see and talk to them. Needless to say, Rachel is very excited about it. Hopefully, it will be up and working tomorrow. Thank you so much for your continued prayers. Please continue to pray:
1. Protection of Rachel's organs and from infection.
2. She would not develop any severe or chronic GVHD.
3. She would be able to get a tooth retainer.
4. She would eat and drink more.
5. Her blood counts would normalize.

Tuesday, April 16, 2002 at 04:27 PM (CDT)

Hi everyone, yesteday was a marathon clinic day. We left here at 7:30 a.m and got home at 8:00 p.m. She had to get a red cell transfusion (3 hours) along with the pnemonia anitbiotic infused (1 hour), chest xray and clinic visit. Her platelets are coming up well, her white count was down slightly and the hemoglobin keeps dropping. The theory is now that possibly she is still making antibodies since her blood was negative and the donor's positive. If so, it takes a while for the donor's cells to take over the lymph nodes which make these antibodies. A blood test was taken to see if this might be the case. She developed high blood pressure after finishing the red cell transfusion and they kept us an hour longer monitoring her, but it came down slightly and sent us home. Then unable to go to sleep that night and being very restless I took her blood pressure and it was very high, after talking to the BMT doc on call several times and giving her some blood pressure medicine and an hour later she threw up, I took her to the emergency room. We got there at 3:00 a.m. and of course within the hour she was asleep and resting well with her blood pressure going down. By 5:00 a.m I told them I was ready to take her home. Noone knows exactly what happenend some fluke that her body couldn't handle the blood fluid. Anyway, we got home at 6:30 a.m. and layed around most of the day. We did find out her ct-scans were all normal. Please continue to pray, I have talked to 2 moms at the clinic that have both told me the problems for their children started after Day 100, which is very disappointing to say the least. Rachel and I have both been counting down to Day 100 (May 5). So we must pray Rachel will be the exception! Please pray:
1. Rachel's organs will be protected and from infection.
2. She would develop no chronic or severe GVHD.
3. She would be able to get a tooth retainer.
4. Her blood counts would be normal.
5. Endurance and perseverance for Morgan and I.
6. Grace to flow through us.

Sunday, April 07, 2002 at 01:25 PM (CDT)

Hi everyone, Rachel is doing pretty well this week. We did have to get a red blood cell transfusion on Monday because her hemoglobin was low. They don't really know why her blood counts seems to be dropping. It is to be expected for some drop after stopping steriods. They did a blood test to determine what percentage of her blood cells were hers or the donors. That test showed it was all donor cells which was wonderful. If her counts don't start coming up they want to do a bone marrow biopsy to see what is going on. This week, the clinic visit is on Thursday. Morgan will be taking her and they are scheduled to get a CT scan of her chest, neck and sinuses because of the difficult airway situation.
This last week was spring break and I think we are all going a little stir crazy. I can't believe how much I long to just take all the kids to Target or to run errands. I used to think it was awful to take them and now I can't wait for us to be able to just run out the door and do whatever! Rachel and I are both starting to count the days to Day 100 which is May 5. I don't exactly know what restrictions will be lifted then besides not having to wear the mask when out in public, but I know there will be some! Anyway, please continue to pray:
1. Protection of her organs and from infection.
2. No severe or chronic GVHD would develop.
3. Her blood counts would become normal.
4. She would be able to get a tooth retainer.
5. Thurs. ct scans and visit would go smoothly.
6. We would be creative in finding things to do at home and would be joyful in the midst of it all.

Sunday, March 31, 2002 at 08:36 PM (CST)

Hi everyone, Rachel had a wonderful birthday yesterday. She is feeling much better but still not eating a lot. She received a new bike for her birthday, one with gears which she has wanted for a while so that she can keep up with us on our family bike rides. She also received a charm bracelet with 3 charms. One had her name and on the back Psalm 139:13-18, the other said Happy Birthday and the third had the date of her birthday on the front and her bone marrow birthday on the back! Then about an hour after opening her presents, 3 families came and serenaded her (outside and from a distance :-) with birthday balloons and songs. She was so surprised and loved it so much!
Tomorrow we are off to the clinic to get to get another checkup and do a pulmonary function test. We are down to only 1 medicine every day and 1 every other day. It was so nice to put the container of medicines away! I think we've determined that Rachel had a stomach virus instead of the magnesium inducing it. She is still getting over it but feels pretty good. Thank you so much for your continued prayers.
1. Protection of all Rachel's organs and from infection.
2. She would not develop any chronic or severe GVHD.
3. Her blood counts would return to normal.
4. She would be able to get a tooth retainer.
5. She would eat and drink more.

Wednesday, March 27, 2002 at 11:50 AM (CST)

Hi everyone, we were able to come home from the hospital yesterday around 5:00 p.m. After a day on fluids all her kidney levels and others leveled out to normal. So we had 2 answers to prayer, we came home quickly and her kdiney levels returned to normal. They are a little concerned in that all of her blood counts were way down. Her white cell count was low enough to make them give her the shot to boost her counts. The doctor tried to reassure me that this is common after the counts come in so quickly so well, that there is a time when they go down and then start to climb back up. So we're hoping that is what is going on. They also came to the conclusion that her diarhea was induced by the oral magnesium we started giving her on Friday. So we are back to giving the magnesium in some IV fluids. She is still not eating or drinking much. Please continue to pray:
1. Protection of all her organs and from infection.
2. She would develop no chronic or severe Gvhd.
3. She would start eating and drinking more.
4. She would be able to get a tooth retainer.

Monday, March 25, 2002 at 06:42 PM (CST)

Hi everyone, over the weekend Rachel developed some diaharrea and has not been eating or drinking much. So at clinic today, after seeing her kidney levels were a little high, and that she was dehydrated, they want to put her on IV fluids and stop the oral magniesium and tacro and see if they can get her levels back to normal. They estimate we will be here for a couple of days. Overall she is feeling pretty well. She feels hungry but then when she starts to eat her stomach starts hurting. We're all hoping she is not developing any GVHD of the gut. Please pray:
1. Protection for Rachel's organs and from infection.
2. She would develop no chronic or severe graft vs. host disease.
3. Her kidney levels would return to normal and we would be able to go home soon.
4. She would be able to start eating and drinking again.
5. She would be able to get a tooth retainer.
P.S.Answer to prayer! I spoke with the endocrinologist and she said that we should be able to start back up on the growth hormone in 6 mo!
Thank you again for your prayers and care for us.

Thursday, March 21, 2002 at 04:22 PM (CST)

Hi everyone, well we are off the steroid medicine and the IV fluids! She is still looking good. They think she might have aspergillus (a fungus) in her lungs from the bronchoscopy test, but without symptoms they don't think it is a problem. I know it sounds strange, but we just need to pray that no lung infection develops. Rachel's birthday is next Saturday and she is really looking forward to it. Her official party won't be for a couple of weeks after that, as it is her school's spring break. Thank you for your continuing prayers. Please pray:
1. Protection over Rachel's organs and from infection.
2. She would develop no chronic or severe graft vs host disease.
3. She would not get a lung infection of any kind.
4. She would be able to get a tooth retainer.
5. She would be able to start back on growth hormone treatment in the next 6 mo.

Wednesday, March 13, 2002 at 04:12 PM (CST)

Hi everyone, Monday's clinic visit went well. Her counts are all still looking good and her hemoglobin looks like it is starting to climb as well. We are down to one steroid pill a day and next week will be off altogether which is a big milestone! Also, we are only doing 1/2 a bag of IV fluids, so hopefully be able to get off that as well next week. The 1/2 bag is not that bad as Rachel only has to get up to go the bathroom a couple of times a night now as compared to 6 or 7 during the liquid food! We went to see the dentist at U of M about what we can do regarding her teeth. After looking at the panoramic x-ray, she showed us that Rachel has no roots on her 8 back molars and the rest are very small so they don't want to do a bridge. They are going to talk with the orthodontist on their team and see if a retainer with 2 teeth on it might work as it spreads the support over the mouth. He is supposed to call me back and let me know what they think. I had an interesting talk with Dr. Cooke, who is the BMT doc who is doing the research study on GVHD of the lungs using the new drug. We were discussing all that Rachel has been through beating Stage IV neuroblastoma in which there are not many children surviving today from back in 1995 and now with her getting MDS and coming through the life-threatening lung problem during her BMT. He said some people would look at Rachel and say she has had really bad luck, but he looks at Rachel and thinks, "I want to take her to Las Vegas with me, as she always beat the odds!". I know beyond a shadow of doubt that it is not luck but God's answers to our many prayers and that Rachel is a child of His! Thought you all might appreciate that! Also, they made our day today as they said Rachel could have a friend over to play as long as they were well and they washed their hands! Yesterday Rachel went outside to play and Cherry, one of her neighbor friends was out and Rachel rode her bike down to ride with Cherry around the block. She was so excited, she was standing up, pumping her bike fast. I just looked out and was overcome with joy that here she is 5 weeks after her ICU stay and she is out riding her bike with gusto! It was one of those moments you soak in and replay. Thank you all for sharing all of this with us.

Prayer Requests:
1. Rachel would be protected from any infection or organ problems.
2. She would develop no severe or chronic GVHD.
3. We would be able to get a retainer with teeth.
4. She would have a good attitude about doing her school work! :-}

Monday, March 04, 2002 at 07:31 PM (CST)

Hi everyone, well I can report there was no teeth loss today! It has been an exhausting day with blood labs, clinic visit, pulmonary function test, chest x-ray and the broncoscopy. The broncoscopy went well except for the pulmonology doctor who decided to find out why Rachel has such a difficult airway and called in the ENT doc to stick fingers down her throat to feel around! This resulted in much throat pain for Rachel and an overall sick feeling that has lasted all day. Her blood counts are great with normal white counts and platelet count which is really incredible. Also, they decided she was eating enough but not drinking enough so we are off the liquid food but on IV fluids so she won't get dehydrated - another vicious cycle. They also have reduced our clinic visits to once a week. I guess there is a lot to be thankful for, tonight I'm just so mad that Rachel has to continually suffer with one thing or another. As you can tell I'm not in that great of a mood and I know it is alot of exhaustion kicking in, I'm still trying to rest and hopefully tomorrow Rachel and I will both be doing better. Thank you for your prayers. Please continue to pray:
1. Rachel's organs will be protected and she will not have any infections.
2. No severe or chronic GVHD will develop.
3. She will start drinking enough fluids to get off the IV fluids.
4. She will have a good week, since we don't have to go back to the hospital for a week!

Friday, March 01, 2002 at 03:58 PM (CST)

Hi everyone, Rachel had a good clinic visit on Thursday, her blood counts are doing well. She is still not eating and especially drinking enough to get her off the liquid food, it really is a vicious circle. Anyway, we are proceeding with the brochoscopy on Monday. The anethesiologist said they won't have to use the metal intubator (that knocked her teeth out last time) they can use something else to put her to sleep. So God-willing it will go fine without more teeth lost. Rachel is more upset about this surgery than she usually is, in part to fear of losing more teeth. She really misses those teeth!
Several of you have asked about visitors while we are home. The rules from the hospital are that she is to be isolated for 6 months, meaning she can not be around children 12 and under, or crowds of people, meaning no school or church. So if you are over 12 and are well and haven't been exposed to anything, I think Rachel would be up to seeing a visitor or two, just call and we'll let you know. Thank you again for all of your help, caring, concern and prayers. It has truly been amazing!
Prayer Requests:
1. Rachel's organs would be protected and she would not get any infections.
2. She would not develop chronic or severe Graft vs. Host disease.
3. Surgery on Monday would go well, with no complications and no lost teeth.
4. She would eat and drink more.

Wednesday, February 27, 2002 at 11:04 AM (CST)

Hi everyone, Rachel is doing wonderful. She keeps telling me she is bored, bored, bored! She's tired of TV, I guess from the hospital so she likes it when Derek and Sarah are home to play with. She starts tutoring today with her teacher on Wed/Fri. so maybe all that catching up homework will keep her from being bored! She is starting to eat some and is getting her taste buds back slowly. Right now the favorites are french fries, pickles and shrimp. Her blood counts are good with her white counts being astronomical and platelets are higher than at their peak during the last 6 years. The hemoglobin is dropping slowly so we might have to have a red cell transfusion in the next week or so, but we can always pray those start growing too. The doctor says those are the last to come in. As for me, I can tell the familiar coming down feelings are starting. The last time, I realized I was in survival mode during treatment and when it was all done is when your emotional and physical tiredness start kicking in. I am trying to get lots of rest as I wait on the Lord to renew my strength so that I can walk and not grow weary and run and not grow tired. Please pray:
1. Rachel's organs would be protected from injury and infection.
2. She would not develop chronic or severe Graft vs. Host disease (GVHD).
3. She would continue to get her taste buds back and start eating.
4. Jenni and the family would get rest and be emotionally, physically and spiritually renewed.

Saturday February 23, 2002 12:58 AM CST

WE'RE HOME!!! Hi everyone, I'm sorry for the lateness in updating, I thought it took yesterday but didn't! Anyway, my sister and Sarah came to spend the night in the hotel on Tuesday and we all took her to the airport on Wed. We were at the hospital clinic all morning Thursday. Her blood counts look great and her platelets are even starting to come up on there own, so maybe we won't have to have anymore transfusions! So they officially released us from the hotel prison! We are thoroughly enjoying being at home...sleeping in our own beds and having the whole family together again! It looks like we will continue to go to the clinic on Mondays and Thursdays. The Enbril study (the new medicine) will be done after next week, which Rachel is looking forward to since it is a shot. But after the study, as part of the study, she needs to have another broncoscopy which I am not too happy about since that is the procedure that she lost the first tooth during. At home though, it is so good to hear Rachel and Derek laughing and screaming playing Playstation and foosball! Rachel is also rearing to get back into school and is dying to start her tutoring lessons with Mr. McCurdy! Some of her taste buds are returning and she is beginning to eat very slowly! Thank you all for your continuing support and prayers for us, we are overwhelmed at the generosity of your hearts toward us.
Prayer Requests:
1. Protection of Rachel's organs and from infection.
2. She would not develop chronic or severe GVHD.
3. Her taste buds would return and she would be able to get off the liquid food.
4. The broncoscopy on 3/4 would go smoothly with no complications and she would not lose anymore teeth.

Monday February 18, 2002 6:23 PM CST

Hi everyone, we are all settled in at the Mircrotel, our new home away from home. We had a tiring day at the clinic in the hospital today, but don't have to go back till Thursday! We do have to go to the hospital to pick up all her medicines tomorrow. Yes, I did come unglued that they were not all ready to be picked up, someone at the hospital messed up and after being at the hospital for 6 hours with some painful procedures, we were both exhausted. But I am trying to press the doctors to let us go home after our clinic visit on Thursday. I feel like Rachel is exposed to so much more staying at the hotel, and I can't fix her enough foods to try to get her off of the liquid food. She basically has no taste buds yet due to the chemo. So here are some additional prayer requests.
1. Protection of Rachel's organs and from infection.
2. The nausea would stay away and she would continue to feel good.
3. No chronic or severe GVHD would develop.
4. Her taste buds would return and we could get off the liquid food.
5. We get to go home after our clinic visit on Thursday.
Your prayers are fueling us now, thank you!

Monday February 18, 2002 6:23 PM CST

Sunday February 17, 2002 2:13 PM CST

Hi everyone,
Well we are off to Microtel Inn in Ann Arbor. The MedInn has not been getting good reviews from BMT patients. The Microtel is just on the other side of campus. We hope to being going home in a week to 10 days. Rachel is doing great, walking, talking, etc. like a "normal" kid. We'll update more info later. Check out the picture of Dr. Ferrara and Rachel in the photo section. They have sent us home with a lot of medicine. So here are new prayer requests.
1. Protection of Rachel's organs and from infection
2. No severe or chronic GVHD would develop.
3. Nausea would stay away and she would continue to feel good.
4. Jenni would give the various medicines at the right time and have no problems giving the IV liquid food.
5. Rachel would start eating and get off the liquid food soon.
Thank you so much!

Wednesday February 13, 2002 12:16 AM CST

Hi everyone,
The past couple of days have been frustrating. They want to release us but Rachel has not been able to take oral meds without throwing them up. Her blood pressure also has still not been stabilized. Both of these things need to happen before they will release us to the Med Inn. So it looks like possibly Sat. Please continue to pray:
1. Nausea and diaharrea would stop, blood pressure would be stabilized.
2. No chronic or severe GVHD would develop.
3. Protection of her organs and from infection.
3. A better attitude for Rachel and I.
Thank you.

Monday February 11, 2002 11:02 AM CST

Hi everyone, I didn't want to move Friday's update to past journal entry's! But I need to update you on what is going on. If you haven't read Friday's it is a must read! Well, we are back into our room on the 7th floor! Last night at 7:00 p.m., as we rounded the corner of the floor, I felt we were making a victory lap, that we needed a band and flags and some hoopla! I can't believe how good the 7th floor seems now! Anyway, they are trying to get her high blood pressure and insulin levels regulated (this is a side effect of some drugs she must continue to take to reduce GVHD, which is Graft vs. Host disease). Once they feel comfortable with that, the doctor says that in the middle to the end of the week we can get out of here. He wants us to stay in town though for a week to 10 days, which I think will end up being at the Med Inn in the hospital, then after that we can go home! She has been having some stomach pain and nausea. So here are the prayer requests today:
1. Normal blood pressure and insulin levels would be maintained.
2. Stomach pain and nausea would cease.
3. No severe or chronic GVHD would develop.
4. Proctection of her organs and from infection.
Thank you so much for bearing all of these burdens with us and for your many prayers we are forever grateful.

Friday February 8, 2002 9:51 AM CST

GOOD NEWS! Hi everyone, (SEE UPDATE AT BOTTOM) Rachel is doing very very well today! Her lungs are clear and they are bringing the ventilator down so she is doing some of the breathing work. They are thinking that we might be out of ICU and on the 7th floor tomorrow. There are so many exciting things to tell you about how God has been orchestrating all of this. I don't have time to go into it right now, I will try to later on today. Thank you so much for praying, today is a day of rejoicing!
UPDATE: They are planning to remove the intubator tube gradually from 6:00 -8:00 a.m. tomorrow morning! Maybe we will be back on the 7th floor tomorrow, but they might want to watch her for a day after they take the tube out in ICU. Today truly has been a day of rejoicing. Everytime we see her BMT doctor he is laughing, joking and smiling. He told us this morning he could spend all day in her room, that these are the moments he lives for and that get him through the other bad moments of his job. He told us that she recovered so quickly it was almost impossible for him to believe that it really is so. Now for all the amazing things God has been doing. It will be long, so patience is required! The way I keep picturing it is God as the orchestrator above us orchestrating all of the events up to this point. Where do I start? This could go on a long time but I'll stick to the hospital stay! First, the BMT doctor is calling her lung problem GVHD in her lungs. The experimental drug that was given to Rachel is part of a research study in which only 2 hospitals in the country are involved, U. of Mich and Dana Farber in Boston. If we were at any other hospital besides these two, Rachel would not have been able to receive this drug. This drug is also in an adult study to give after BMT to reduce GVHD. The FDA has not approved this drug for use in children but has approved it to be used in a life-threatening situation that Rachel was in, so she was able to get the drug because of her lung situation but would not have been able to get it otherwise. The traditional treatment for reducing GVHD is high dose steroids which Rachel is also on. The doctor thinks in 5 years the protocol will be to give this new drug and much less or no steroids which have other nastier side effects. Ok, if that is not enough, here is some more. As Dr. Ferrar (her BMT doc) was speaking with us this morning, I asked him about the author on the new drug study, if he was this so-called GVHD expert I had heard about at U Of M, the one other doctors call from all around the country asking questions about what to do about this or that GVHD problem. He sort of hesitated and Morgan said, "You're the expert aren't you?", and he said, "Well, yeah." Not only that but he just came to U. of Mich. 3 years ago to become the director of BMT from Harvard, where he had been doing research for 20 years on animals to reduce GVHD. He came to U Of M to continue his study in a clinical setting. Now, on the BMT floor, the BMT docs rotate every 2 weeks. Dr. Ferrar just came on rotation a week ago. So God arranged for the expert on GVHD and this drug to be Rachel's doctor when she developed GVHD of the lungs.
Now, looking back on all of this, it is incredible to me to see that in order for Rachel to receive this new drug, she had to develop this lung situation. They are hoping that we will be able to reduce the steroids quicker since she is getting this drug. As I was drying my hair and putting on make up (the first time in 3 days, it felt so good!)I prayed Lord don't let me forget all you have done for Rachel. And He said I've given you 2 permanent reminders... her 2 lost teeth. One was lost flushing her lungs, the other when putting the ventilator tube in. As bad as that is, it is a permanent reminder of God's grace and sovereignty that I believe will become special to both me and Rachel. It is only God's grace that is allowing me to see the tooth loss as a blessing! (SIDENOTE: Her teeth only have 1/3 root of normal teeth because of the radiation she had 6 years ago, most people don't lose teeth when intubating.) Anyway, I hope you all see God's hand in all of this and realize we are nothing special, He is doing this all of the time in all of His children's lives, we just don't see it. I am so grateful and completely overwhelmed at all of your support, concern and prayers on our behalf. I have to say, the doctor did remind us we are not home free yet, but he did say we will start talking about releasing us from the hospital, as her white cell count is normal now, with numbers we haven't seen since before the neuroblastoma 6 years ago! So I still have prayer requests!
Prayer Requests:
1. The intubator would be able to be removed tomorrow with no complications.
2. Rachel's lungs and GI tract would heal.
3. She would have no severe or chronic GVHD.
4. We would be able to go home soon. (Now that is nice to be able to ask for that prayer!).
Thank you all from the bottom our hearts! Jenni with Morgan

Thursday February 7, 2002 8:42 AM CST

Hi everyone, (SEE UPDATE AT BOTTOM)
We need everyone's prayers today. Rachel is really struggling, is agitated and restless. Because she has a difficult airway, they are wanting to intubate her during the day and not get in an emergency situation. They have told us it will be very difficult to intubate without her losing too much air and also since they knocked a tooth out the last time, they are nervous about it. They will be doing it between 11:00 and 12:00. Please pray that they are able to intubate easily without any complications and then for complete healing for Rachel. Thank you.
UPDATE: They were able to intubate her. She lost another tooth though. Please continue to pray for healing.

Thursday February 7, 2002 7:40 AM CST

Hi everyone, everything is pretty much the same, not worse, just the same. The new drug was given around 6:00 last night and they said if it is going to work, we should see improvement within the next 24 to 48 hours. She is still in ICU and feeling bad all over, very restless. Morgan and I are both very tired. Please pray that Rachel would be completely healed and for wisdom for the doctors and nuses. Thank you.

Wednesday February 6, 2002 8:49 AM CST

Hi, we ended up in ICU about 1:00 a.m last night. Her chest x-ray looks worse than yesterday with more fluid in her lungs. We are trying to get it out with some medicine so they don't have to drain it and it looks like they are leaning towards the IPS diagnosis, the new drug should be given this afternoon.
Please pray for complete healing. Jenni

Tuesday February 5, 2002 10:22 AM CST

Hi everyone, (SEE UPDATE AT BOTTOM) I've got to do this quickly, but we need your prayers desperately. Rachel developed some lung complications overnight. She is having surgery, today at 1:00 p.m. to get a tissue of her lungs to determine if it is an infection in her lungs or imflammation. The statistics are not pretty, an infection has a 50% mortality rate. The inflammation has an 80% mortality rate, although there is a new experimental drug that seems to help the inflammation problem. The 4 people who U Of M has treated with this experimental drug have all recovered. If Rachel does have the imflammation we are going to be using the experimental drug. They have told us the next few days are going to be difficult and she could end up in the ICU. Thankfully my mom and Jim are here and Morgan and I are both going to be at the hospital.
Please pray:
For healing,
For a successful surgery with no complications.
Thank you so much
UPDATE: 6:00 p.m. Rachel is back up in her regular room. The doctor doesn't think she will need to go to ICU tonight. They have given her steroids to reduce the inflammation. They did knock a tooth out during the surgery, the one next to her front tooth, which is a little irritating. We won't know until 4:00 p.m. tomorrow if it is an infection. She seems to be resting now. Thank you for your prayers. She is resting in the Lord's arms now.

Monday February 4, 2002 2:21 PM CST

Hi everyone, today is Day +11 and her white count was .5, it has been hovering at .3 and .2, so we are all hoping this might be an indication that her new marrow is growing. She still has the rash and it has developed on more places, so they are watching it closely to see if it could be early GVHD. The diaharrea frequency has decreased since giving the Imodium AD, now we seem to be battling nausea. They gave her a new drug today so maybe this will help. She had her days and nights mixed up yesterday so I am trying to reverse that today. She was up for 2 hours today while I read the Secret Garden to her, she also walked from one end of the room to the other, which was quite an accomplishment. The bloody noses have diminished with giving her this frozen plasma along with the humidified air and the clotting factor drug which is nice. Her mouth sores are healing also. She is still having 101-102F fevers but still nothing has grown in the blood cultures. Morgan is coming up and we are switching for a day until Tues. night.
Please pray:
1. Nausea, mouth and body sores, rash, diaharrea, fever will cease.
2. New marrow will engraft quickly with no chronic or severe GVHD.
3. Protection of her organs and from infection and that her liver would return to normal size.
4. She would be able to get up and walk twice a day.

Sunday February 3, 2002 12:39 AM CST

Hi everyone, this is Day +10. I came back to Rachel early this morning so Morgan could go to church. They had a rough night with a bad nose bleed and lots of diaharrea with not making it to the toilet most of the night. Morgan was pretty worn out. Overall though I think Rachel is doing much better than when I was here last Thursday. She is talking now and will take Tylenol and water and is doesn't seem to have as much mucositis. The diaharrea is quite bad though. They have given her some medicine to help coagulate her blood and that has been helping a little with the nose bleed. They are watching her closely though as they don't want this to cause her to develop a clot in her urethrea as she has had some blood in her urine. She still has a fever around 102F still nothing has grown in the blood cultures. Morgan did say that Friday and Saturday nights went very well, so some of our prayers were answered for them to rest! She has also developed a rash which the doctor does not think is early GVHD.
Prayer Requests:
1. bloody nose, diaharrea, rash, mouth and body sores would cease.
2. Her new marrow would engraft quickly with no severe or chronic GVHD.
3. Protection of her organs and from infection.
4. She would not develop a clot in her urethrea.
5. She would get up twice a day and move around.

Friday February 1, 2002 3:54 PM CST

Hi everyone, I am at home now which is hard for me to be away but I know I need the refreshment to come back to the fight at Rachel's side. She is having a very hard time. The humidifier tent worked well the first day, she only had 2 nosebleeds. Since I left though, she is back to having them every few hours. Her mouth pain is quite intense so she doesn't talk but will make motions with her hands, she is sleeping alot or as much as she can. The blood cultures have come back negative and she still has no organ problems, thankfully. She is retaining a lot of fluid though and has gained 7 lbs since we've been there. I'm keeping the same prayer requests.
Prayer Requests:
1. Protection for all her organs and from infection.
2. Nosebleeds, mucositis, mouth sores and nausea would cease.
3. Her new marrow cells would engraft quickly with no severe or chronic GVHD.
4. She would be able to get up and walk around some.
5. Rest for she and Morgan this weekend.

Friday February 1, 2002 3:54 PM CST

Hi everyone, I am at home now which is hard for me to be away but I know I need the refreshment to come back to the fight at Rachel's side. She is having a very hard time. The humidifier tent worked well the first day, she only had 2 nosebleeds. Since I left though, she is back to having them every few hours. Her mouth pain is quite intense so she doesn't talk but will make motions with her hands, she is sleeping alot or as much as she can. The blood cultures have come back negative and she still has no organ problems, thankfully, she is retaining a lot of fluid though and has gained 7 lbs since we've been there. I'm keeping the same prayer requests.
Prayer Requests:

Wednesday January 30, 2002 7:28 PM CST

Hi everyone,
Last night was a repeat of the night before. She is having nose bleeds every 4-5 hours which doesn't allow for
much rest. The new pain medicine is still not working well, we're trying to adjust the dosage. The nosebleeds
drain into her stomach and then makes her nauseous and causes her to throw it up. It has been one vicious
cycle. This morning I had my guns ready (along with some tears, which I think helped!) and asked them to bring
in an ENT doc. He came and suggested putting a tent under her chin that would blow humidified air into her
nose and mouth. I could've hugged him! It is so dry in here from the filters I knew that was a large part of the
problem. That got hooked up a couple of hours ago and has at least made her a little more comfortable. We're
still trying to get the pain medicine dosage adjusted. She has now developed a 101F fever, they're doing blood
cultures, but hopefully it is just engraftment. She got her first GCSF shot today which is supposed to help the
marrows donor to engraft. Her mouth is pretty sore, but so far no diaharrea and no organ problems. For which I
am very thankful.
Prayer Requests:
1. Protection of all her organs and from infection.
2. The donor's cells would engraft quickly and with no severe or chronic GVHD.
3. Nosebleeds, mucositis, nausea would cease.
4. Feel good enough to walk around some tomorrow. (I've given up on today).

Wednesday January 30, 2002 5:00 PM CST

Hi everyone,
Last night was a repeat of the night before. She is having nose bleeds every 4-5 hours which doesn't allow for much rest. The new pain medicine is still not working well, we're trying to adjust the dosage. The nosebleeds drain into her stomach and then makes her nauseous and causes her to throw it up. It has been one vicious cycle. This morning I had my guns ready (along with some tears, which I think helped!) and asked them to bring in an ENT doc. He came and suggested putting a tent under her chin that would blow humidified air into her nose and mouth. I could've hugged him! It is so dry in here from the filters I knew that was a large part of the problem. That got hooked up a couple of hours ago and has at least made her a little more comfortable. We're still trying to get the pain medicine dosage adjusted. She has now developed a 101F fever, they're doing blood cultures, but hopefully it is just engraftment. She got her first GCSF shot today which is supposed to help the marrows donor to engraft. Her mouth is pretty sore, but so far no diaharrea and no organ problems. For which I am very thankful.
Prayer Requests:
1. Protection of all her organs and from infection.
2. The donor's cells would engraft quickly and with no severe or chronic GVHD.
3. Nosebleeds, mucositis, nausea would cease.
4. Feel good enough to walk around some tomorrow. (I've given up on today).

Tuesday January 29, 2002 6:04 PM CST

Hi everyone, it was a very good day yesterday! After I posted and after I pushed the morphine button quite a bit, Rachel and I went to the isolation playroom and played a full game of backgammon and then walked the hall and back to her room. We were able to do the same thing again after her afternoon nap and overall it was a very good day. I couldn't wait for the doctor to come in this morning to show him the 4 stickers under her excercise box! Today though has not been that good. The night was hard with mouth and nose bleeds and today has been more of the same plus nausea from swallowing the blood I think and a general achiness all over. She has slept alot. So I guess there will be good days and bad days. Let's just pray there are more good days! Her organs are all okay and she still doesn't have a fever. So I will keep the same prayer requests.
New Prayer Requests:
1. Protection of all of Rachel's organs and from infection.
2. The bleeding will stop from all the various places, that they would be diligent in keeping her platelet count high.
3. That Rachel would get up and walk around at least twice a day and that I would be able to look past her pain, to what needs to be done. (The doctor said if she doesn't get up and walk around and ends up on steroids later, she may be debilitated enough to be in a wheel chair) So it is very important that I not be so easy on her with this. It is very hard for me to get her to walk around especially when she is throwing up.
4. The mucositis and mouth sores would go away.
5. That engraftment of her new marrow would be quick and she would have no severe or chronic Graft vs- Host disease.
I can't tell you what it means to me to know that I can come here and know that you are praying for us. Thank you so very much! Oh, we received a letter from her donor yesterday that was so sweet. At the end she said she and her family, friends and church had been praying for Rachel for a long time. I'm going to write her a letter and tell her how we have all been praying for her too!

Monday January 28, 2002 10:25 AM CST

Hi everyone, I just had a long conversation with the doctor and now have some very specific prayer requests as well as some answered prayers to report. First, the next 10 days are critical for Rachel. Her blood levels have bottomed out completely and she is now transfusion dependent and susceptible to infection until the donor's marrow becomes her own. This is supposed to happen hopefully over the next 10 days. She has had trouble with continued bleeding at her surgery site, bloody nose and mouth bleeds, they are now going to be giving her platelets more often. The biggest answer to prayer is the report that they were able to collect, as we prayed, an overabudant supply of donor marrow! She was infused with over 4 times the cells needed, which will hopefully help her to engraft quicker. The other answer to prayer is that her liver enzymes returned to normal as we also prayed! Her liver is still enlarged though.
New Prayer Requests:
1. Protection of all of Rachel's organs and from infection.
2. The bleeding will stop from all the various places, that they would be diligent in keeping her platelet count high.
3. That Rachel would get up and walk around at least twice a day and that I would be able to look past her pain, to what needs to be done. (The doctor said if she doesn't get up and walk around and ends up on steroids later, she may be debilitated enough to be in a wheel chair) So it is very important that I not be so easy on her with this. It is very hard for me to get her to walk around especially when she is throwing up.
4. The mucositis and mouth sores would go away.
I can't tell you what it means to me to know that I can come here and know that you are praying for us. Thank you so very much!

Friday January 25, 2002 4:28 PM CST

Hi everyone, Rachel is doing fairly well, though she still doesn't feel good most of the time. The marrow infusion went fine with no complications, thanks to our Lord's watchful eye. Today we are hoping that she will feel good enough to go on a little walk around the hall and maybe to the isolation playroom. We've got new pictures up of Rachel in her room to check out. The second picture shows a bunch of $1 bills on the wall. This is attached to a note that one of the doctor's put up that says $1/exam Doctor's orders! So she is making some money here! Yesterday was a big day and was completely as we all prayed. Thank you so much and to our Lord who I know is loving our dependence upon Him.
Prayer Requests:
1. Rachel's liver enzymes would return to normal.
2. Rachel would feel good enough to walk around and play some games.
3. We could get the personal pain system down so she is not in pain.
4. Continued healing and well-being for our wonderful donor.
5. Rest and sleep for Rachel and Morgan.

Thursday January 24, 2002 4:14 PM CST

Hi everyone, it has been a long day so far. The surgery went very well and the apheresis went well also. So we are 2 procedures down with the marrow infusion left to go. Rachel is playing with Sarah now in her bed with the Shop with Barbie Cash Register and is really having fun. It seems the nausea is dissipating and now we just have to get the hang of using the personal morphine pump. I have been thinking and praying so much today for our wonderful donor, I just can't believe someone who doesn't even know us is going through this procedure today. Anyway, I am planning on staying until the marrow infusion and then will be back home until Sunday. I will try to update over the weekend or have Morgan do it.
Prayer Requests:
1. Praise God that the nausea is dissipating and she is smiling today! Also that the surgery and apheresis went very well.
2. Pray that the marrow infusion will go very smoothly with no adverse reactions.
3. Pray also that Rachel not experience severe or chronic GVHD.
4. Pray that our donor will recover quickly and have no pain and will be surrounded by wonderful caregivers as she recovers.
I have just read all of your remarks and am simply amazed as the choruses of prayer that went up to our Lord during Rachel's surgery. It just floors me and I know it puts a big smile on the face of our Savior as we place our cares with Him. You all are so precious to me. With a grateful heart, Jenni

Wednesday January 23, 2002 1:58 PM CST

Hi everyone, today there has been a little improvement but she is still throwing up when she is awake, so she tries to sleep alot. They have brought in a PCA morphine pump which will allow her to push a button whenever she feels she needs it. The mouth sore pain has been under control. She scheduled a playdate in the isolated playroom to do some crafts with one of the volunteer in the afternoon but I don't think she'll feel like going. We have the time for the big events to happen tomorrow. The surgery will be at 9:45 a.m. and we won't be having the anethesiologist that we had last time that I didn't like so that is good. The one who will be the anethesiologist said that the reason she was sore last time is that they had to intubate her where normally they don't have to so we can pray that she will not have to be intubated. After the surgery she will have the apheresis done to filter off the AB antibodies. The donor's marrow is scheduled to arrive at the Detroit airport at 6:00 p.m. and will be infused in her central line around 9:30 p.m. Morgan is scheduled to come up Thurs. and we are to switch again. I will stay the night up here so we both can be here for the infusion. The Med Inn has a huge waiting list, but with it's convenience being right here in the hospital, I would really like to stay here. I also think Sarah will be coming with us as Rachel really misses her and wants so badly to spend more time with her.
Prayer Requests:
1. Rachel's nausea and vomiting will cease, the mouth sores will go away and she will feel good enough to sit up and watch a movie, play a game or walk around the halls (doctor's orders).
2. Rachel will not need to be intubated during surgery and that the surgery, apheresis and marrow infusion will go smoothly with no complications.
3. Rachel's new marrow will engraft quickly with no severe or chronic GVHD (Graft vs. Host Disease).
4. Our wonderful donor's procedure would go extremely well, with no pain and an overabundant supply of cells would be collected and transported with no problems. Also that she would be protected and blessed with caregivers surrounding her who will treat her like the hero she is.
5. The Lord will help us all to dwell in His presence in peace and rest during the day on Thursday.
6. A room in the Med Inn would open up for us to stay there Thursday night.
Thank you again for your continuous prayer support. Our Lord is faithful and will accomplish what He has set out to do.

Tuesday January 22, 2002 11:40 AM CST

Hi everyone, Well, today has started off not so good. They gave Rachel the cytoxan dose at 6:00 a.m. and 2 hrs later she still couldn't go back to sleep and started complaining that her mouth hurt and her stomach hurt. The nurse gave her some morphine and that has stopped the mouth pain, but we have been dealing with nausea/vomiting most of the morning. They have given her more nausea medicine and some morphine now and she is able to sleep for awhile. They are making her get up every hour to use the bathroom so the chemo will not sit in her bladder and irritate it. So that makes it hard for her to get some rest. The doctor really wants her to get up and walk around but with her feeling as bad as she does (she says her whole body aches) it will be hard to get her up to do it.
On another front, I requested that we not have the same anesthesiologist that did the central line placement because her throat hurt for 2 days which has never happened before. I asked if we could have the anesthesiologist we had in August for her eye surgery. She was very concerned about Rachel and gave us that little extra attention. I don't want any unnecessary sores from this surgery as her blood counts are starting to bottom out and no healing will take place until they start to come up which probably won't happen for a couple of weeks. They have emailed this doctor to ask if she can come in and do the surgery.
Prayer Requests
1. The anesthesiologist will be able to perform the surgery.
2. Thursday's surgery, apheresis and marrow infusion will go very, very smoothly.
3. Rachel's mouth sores would heal up, her nausea and vomiting would go away, and no diaharrea.
4. Please pray against any infection.
5. For our wonderful donor - protection and her procedure would go very smoothly with no pain for her and that an overabundant supply of cells would be collected.
I am so thankful to the Lord for all of you. That you are here for me to share these requests to and that you care so much for us. Rachel is one tough cookie. She is being strong and courageous and we both know the Lord is always with us and will never forsake us. Jenni

Monday January 21, 2002 12:52 AM CST

Hi everyone, It is another good day here with Rachel eating and drinking, no mouth sores, except a couple where she bit her tongue, and no diaharea/vomiting! Today is the last day of the ARA-C. Tomorrow is the Cytoxan which the doctor says will really make her feel awful. But we will keep praying for the opposite! We are on our way to the isolated playroom where they have a Playstation set. Thursday Rachel will have to have another surgery to place an apheresis iv line. This is necessary as they found a high level of AB antibodies in her system. They will use this line to apheresis (sipher/filter) off the antibodies in her blood just before the give her the new marrow. The donor's blood type is different from Rachel's O-, she is AB-.
Prayer Requests:
Rachel would continue to have no mouth sores, nausea/vomiting or diaharrea.
Our wonderful donor would be protected and an overabundant supply of her cells would be collected. The procedure would go smoothly with no pain for her.
Thursday's surgery, the apheresis and marrow infusion would go very, very smoothly.
Thanks again for your prayer support, I don't think we'll fully know the impact of it until we see the Lord face to face. Jenni

Sunday January 20, 2002 6:46 PM CST

Hi everyone, we have switched back and I (Jenni) am at the hospital. I can tell Rachel is feeling much better. I think now the surgery made her sore and not feel well. She is really back to normal, her feisty self, taking control of everything! It is so wonderful to see her doing so well. The doctors are amazed at how well she is handling the chemo so far. We finished the many pill chemo and today is the first day for ARA-C. So far so good. The nurse keeps asking, How's your stomach Rachel and she keeps saying good! God has been answering that prayer! Thank you for praying.
Prayer Requests:
Rachel would have no mouth sores, diaharrea or nausea/vomiting.

Friday January 18, 2002 5:44 PM CST

Last night, we switched and Morgan is at the hospital with Rachel and I am at home. They have reduced the number of chemo pills Rachel has to take due to their kinetic study(how fast she processes the medicine) so it is a bit easier to take 3 smaller loaded capsules. She is still eating and feeling well. She is still a little tender and a lot bruised from the surgery. But she keeps us busy playing games and cards, her latest favorite is gin rummy, although Morgan just taught her 5 card draw poker today so I don't know what I'll be getting into when I go back on Sunday.:-} The doctor is pleased with how well she is tolerating the first chemo drug. She still has not thrown up (answer to prayer!).
Prayer Requests:
1. Rachel will continue to take the pills easier and will not experience any nausea.
2. Morgan and Rachel will be able to get some sleep tonight.
3. Our donor - that she will be protected and healthy for the donation and they would be able to get lots of stem cells for the transplant on the 24/25th.
Thank you for your prayers. The Lord has been close to both Rachel and I. - Jenni

Wednesday January 16, 2002 7:56 PM CST

Hi everyone. Well, the decision was made to proceed upon learning that the mismatch A was a very rare type and unlikely that anyone would match better than our other donor. So we have had one day of the Busulfan chemo drug. It has been alot of pills to swallow and pre-meds to take. I am very tired, so I will update more later.
Prayer Requests:
Peace and Joy of the Lord will prevail.
Rachel will have no nausea and the wobbliness in walking will dissipate.
Protection from infection and mistakes as the floor is very busy with sick children.
Thank you so much for your prayers. Jenni

January 15, 2002

Hi everyone. A little glitch has ocurred that I don't know what to make of and so am asking for prayer today. As I understand it U Of M is using a new higher resolution techonology (just available last week) that showed our previously matched donor (at the lower resolution level) to be a mismatch in the "A" cell line. So she matches now 7/8. The doctor has told us this for all of us to make a decision as to go ahead now or wait for 2 other donors who need some more typing to see if they may match 8/8. We know one of these two are CMV + which is not so good. So basically we really need wisdom as to proceed now or wait. We are currently in the hospital and Rachel had her central line surgery and a bone marrow biopsy yesterday. Please pray for fast healing of soreness in her chest from the surgery. Overall she is doing well.
Prayer Requests:
1. Lord's will will be evident to us regarding to go ahead today or wait.
2. The Lord would speak through the doctors.
3. Rachel's chest and throat would feel better soon.
Thank you so much for praying. It is so nice to be able to come here and ask for prayer when we really need it. I will update more later.

Saturday, January 05, 2002 at 11:24 AM (CST)

Hi everyone, we just completed our day of complete organ baseline testing to prepare for Rachel's BMT. It went much better than I had expected which was an answer to prayer. Rachel was able to do the pulmonary test which she couldn't do 2 years ago and the EKG and Echo tests went well despite Rachel's hate for the sticky pads they put on you for the monitors. The doctor gave us the schedule for the first 10 days.
Jan. 14 - Central line placement surgery and then admit to the hospital.
Jan. 15-18 - 1st chemo drug - Busulfan, which is 12 pills, 4 times a day.
Jan. 19-20 - 2nd chemo drug - ARA-C by IV thnakfully.
Jan. 21-22 - 3rd chemo drug - Cytoxan again by IV.
Jan. 23 - A day of rest.
Jan. 24 - is considered Day 0 as she will be infused with our wonderful, generous donor's bone marrow.
After that we wait for her cells to engraft in Rachel.

Prayer Requests:
Kindness will reign in the Swink household (instead of the familiar snappiness).
Rachel's, Morgan's and Jenni's attitude would stay up beat and would be able to place complete trust in the Lord and His plans.

Thursday, December 27, 2001 at 04:51 PM (CST)

Hi everyone, Rachel is 9 years old. Six years ago she was treated for Neuroblastoma Stage IV. Her treatment then consisted of surgery, radiation, chemotheraphy and an autologous stem cell transplant including Total Body Radiation. Last April she was diagosed with Myleodysplastic Syndrome which is a result of her treaments for the neuroblastoma. The only known cure is a bone marrow transplant. Since none of her immediate family members were a match, we looked at the National Bone Marrow Donor Registry. Out of the 10 identified matches, the doctors narrowed it down to a 20 year old woman who is a 8/8 match, CMV- and AB- blood type. We will be forever grateful for this wonderful woman's generosity and gift to us. If you would like to be on the Bone Marrow Donor Registry, please go to www.hlaregistry.org to sign up. If everything goes according to plan, Rachel will be admitted to the University of Michigan Mott Children's Hospital on Jan. 14 for around 6 weeks.

Saturday, November 17, 2001 at 08:03 PM (CST)

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