Day -8

Yesterday went well. Rachel didn't even get a rash from the Campath. They had given her extra Benadryl in pre-meds and that really seemed to help. A friend from a church in town came by to visit yesterday evening for a little while. We really enjoyed that.
Day -8 Friday
When Rachel woke up this morning she didn't have as much energy as she has been having in the past and not much of an appetite, although she did eat a breakfast bar. The nurse started her last dose of Campath around 10am....5 days down! The Benadryl was making her sleepy so she went back to sleep for a couple of hours. When she woke up she ate lunch and now is working on her exercises. She still is kind of dragging today, but that is to be expected. She is constantly on a drug for nausea, slowly administered through the line around the clock. Seems to be working. The doctors think she is doing great!
Tomorrow she starts on a different chemo Clofarabine for 5 days. Keep on praying. We love you!

Day -10

Last night Rachel woke up with a bad headache and a slight fever. Tylenol was tried first but didn't help so then they gave her the strong stuff. She slept in this morning until around 9:00am. She received the 3rd dose of Campath around 10am. Each dose takes about 2 hours from start to finish. She did good only having trouble with the rash again. She has been as active as possible getting her PT(physical therapy) exercises done and staying out of the bed. PT says it is better to be in the chair as much as possible and so Rachel is making a point to do so especially while she is feeling pretty good. All in all a very good day. Thanks for all of the prayers we know that is getting us through.

Day -11

Rachel actually started feeling better last night and she had a late dinner around 9:15pm. She slept through the night as well. This morning she woke up feeling sore around the area where they put her central line in, but otherwise felt pretty good. She ate breakfast and then around 10am they started the second dose of Campath. She did fine through this dose with the only side effect being a rash, which could have come from the antibiotic. They gave her Benedryl and she is feel better.

Physical and occupational therapy have been in and she has done some exercises. She is feeling very shaky and out of control with many of her movements and so after her shower it felt good to get back in bed for a while. Physical therapy wants her to sit up in a chair as much as possible while she is feeling good, so after her dressing change for the line, she will probably sit up in a chair and watch TV for a while. At this point she cannot leave the room unless absolutely necessary for an x-ray and then only with a mask. It is very important that she not be exposed to any germs or viruses. The Chemo is basically trying to get rid of her immune system so that it will be ready to receive the marrow, so she is at a high risk for illness and infection. The hospital is very strict about allowing certain thing into her room as well, like plants and flowers.

Our care partner came to see us today. We had nice visit. She is pretty knowledgeable about this procedure because her son had one many years ago. We are very fortunate to have her and some friends from a local church that have been so helpful to us. The Care Partners organization also gives new patients a bag full of things and a cute stuffed animal. Here is a picture.
This picture is of the 3 stuff animals that brighten our room. Aren't they cute? Rachel has had her Panda(not pictured) since she was born thanks to Aunt Vikki, and he came here as well. He needed to be washed in order for Rachel to be able to be around him now so our care partner took Panda home to wash him and then he will be back to join the pack! Thanks care partner for the goodies!

Day -12 (updated)

UPDATED:

Rachel has finished her first round of Campath, and has had a spike in fever. That is to be expected, but they will do a chest x-ray and also are giving antibiotics. She is achy and has a bad headache. She has also had one round of nausea. They gave her something like Benadryl to keep her from getting a rash/hives, which is another side affect from the Chemo so she is sleeping at the moment. Please keep praying that she will not feel the affects of all the harsh meds she is getting and that she will be able to sleep through some of the pain/nausea.

Some of you have asked about how to get in touch with us. We can now use our cell phones in the hospital room (yea!) and you can also email us at followrachelsjourney@yahoo.com. This is also posted in the sidebar of this blog.

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ORIGINAL POST:

We arrived this morning around 7am and got Rachel admitted into the hospital. Then we went up to the the bone marrow transplant unit(BMT) on the 5th floor so we could put our things in the room and they could get a height and weight on Rachel. Then it was back down to the 2nd floor where we were to wait until they called Rachel back to get her central line. They called her back to the prep room where they had to put an IV in for the pain meds and they got it right in the first time! Then they took her to the OR to put in the central line. During that time I went and got my parent pass ordered. This is a card that has the parent's picture and it activates the doors to the unit so I can come and go in and out of the unit easily. Any other visitors have to pick up the phone for access into the unit.

At this moment Rachel is receiving meds to help prevent side effects from the Campath-1H that she will be receiving in about 15 minutes. This is the first drug in the 12 day protocol leading up to transplant day which is day 0. So today is -12 in the process. Many people have asked me if Rachel can receive flowers and the answer is no flowers or live plants and also no latex balloons. The mylar kind of balloon is fine. There seem to be no other restrictions on what she can receive. Here are a few pictures of the room. We did get one of the larger rooms.

Cheese Cake Factory

For most of the weekend Rachel wasn't feeling that great so we didn't do too much. We did get to Walmart and on Sunday we went to the Cheesecake Factory. We had never been there before and cheesecake is Rachel's favorite dessert so that sounded like the perfect place to go. The rest of the evening we have been getting everything lined up for the hospital tomorrow. We will need to check in at around 7 as she has to be in the Gold Room at 8am.

Date Changes...

Thursday Rachel had an appointment at the Gillette Children's Hospital in St. Paul. This was at a gait/motion clinic. They took video of her walking and turning to have a pre-transplant marker. This will help them determine if the transplant was successful in stopping the progression of the disorder. Rachel still had a headache from the spinal tap so we went back to the clinic where they gave her a caffeine IV. She felt a little better for a while, but the headache came back in the evening.

Today, Friday, she is feeling better so far. Rachel was suppose to get the central line put in today, but they changed that to Monday and then she will be admitted to the hospital at that time. Looks like actual transplant will be on August 8th. Marrow will be drawn from the donor on the 7th, but it won't get to the hospital in time for Rachel to receive it until the 8th. Today we are headed to Rochester to the Mayo clinic to see the neurologist Rachel has been seeing there.

Monday and Tuesday

Monday Rachel had just a few appointments. One was with the social worker. She gave us a tour of the bone marrow transplant unit as well as information regarding parking, and general information about staying there. There is a washer/dryer unit on the floor and a shower, and a kitchen all of which are shared by the caregivers. I can get a parking pass for the month which will be a big help. At the moment I am paying anywhere from 7-10 dollars a day. The second appointment was with Cardiology. It was pretty short and we were done with the day by 12:30. So we decided to go back to the condo and then head out to Walnut Grove ,Minnesota...one of the places Laura Ingalls Wilder lived. They have a museum there and the have land markers of where their dugout house was and Plum creek is still there. Rachel and I are fans of the TV show and books so we enjoyed this little trip.

Tuesday was another story. Rachel had a pulmonary function test then a neurology appointment. We also knew they had scheduled a lumbar puncture....spinal tap, which I was a little concerned about, but that took a back seat when we got there and found out they had scheduled a bone marrow biopsy. Rachel is a trooper and when it took 3 tries to get an IV started she never moaned or winced....much braver than me. So when she was in pain during the bone marrow biopsy I knew she was in pain. They had to try a second time because they couldn't get enough out the first time in the spot they were in. They did give her some meds to try and help with the pain, but it seems to me they should have done this procedure with her more sedated. The spinal tap didn't go easy either as they had to do that twice as well, but it was still easier than the bone marrow procedure. So by the time we got home Rachel was tired and nauseated. She slept for a while and then got up, still felt bad and slept some more and then went to bed. This morning (Wed) she isn't as nauseated, but has a really bad headache. Probably from the spinal tap. She is laying in a room at the clinic at the moment 12:30pm waiting for our last appointment of the day which is the exit conference where we will hear the results of all the tests and if everything turned out fine Rachel will sign all of the consent forms.

Weekend Recap

On Thursday, July 16th Rachel had about a 3 hour appointment with Neuropsychologist. She has seen these doctors before and really likes them. In the afternoon we met with Care Partners which is a volunteer program that provides support for children and adult bone marrow transplant patients. They have family volunteers which act as a best friend...someone that might support you like a friend would even though you are far from home. They also have unit volunteers that will be working on that floor of the hospital. They can play games or come in and sit with the patient while the caregiver takes a break. Sounds like a good program and they have been doing this at this hospital for 25 yrs. We also found out that you can't use cell phones in these particular hospital rooms (something to do with the equipment.) We can use computers but they said the Internet connection in these rooms aren't very good.

Friday we didn't have any appointments so we slept in and then did some cleaning around the condo. Later we took a trip to Walmart...of course. :) In celebration of Rachel's birthday, which is on transplant day (Aug. 7), we ate at Chili's. On Saturday we went to Mall of America. We walked around until we were beat and then headed back to the condo. We have been going to a coffee shop on most days to use the wireless Internet connection there since my phone seems to be having trouble here. Now it appears we do have connection at the condo through my phone so we are happy about that.

On Sunday we visited a nice local church that has been in touch with us. They are a very friendly group and we enjoyed a good time of worship with them. Our neighbors go to the same church and invited us to lunch. That was a great time of fellowship. Since Rachel will be admitted to the hospital on Sunday, this was pretty much our last free weekend for a while so we tried to have some fun and I think we succeeded. Here are some pictures from the Mall of America.

3 Days Down...

Yesterday we met with the bone marrow transplant nurse coordinator to talk about all of the things we can expect during this procedure. We discussed the numerous side affects as well as the types of chemo and different drugs that will be used. We also went over the time line of when things are scheduled to happen. The central line will be put in on Friday July 24th. She will be admitted to the hospital on Sunday July 26, and then she will start the Chemo that same day. Rachel will receive 5 days of one kind of Chemo, 5 days of another, 1 day of another ,and then on the 12th day of treatment she will receive radiation. Friday August 7 is scheduled as transplant day. Yesterday, Rachel also had an echo cardiogram and was seen by the ophthalmology department. Another busy day behind us.

Blessing Rings!

On Monday Rachel had several appointments at the bone marrow transplant clinic for labs and a physical. The doctor went over all the aspects of what to expect during and after her treatment. She also had a chest x-ray and an EKG. We had a consultation about the central line (still not exactly sure when that will go in) and a 2hr MRI. Several of the appointments ran late, which meant no lunch until very late in the day. Thank heaven for our friends who gave us snacks and a tote which I took with us that day. We have a very nice neighbor who gave us very helpful directions to and from the hospital. I am so thankful because this is a big city!

Today Rachel had a nerve conduction study. This was some what uncomfortable for her because they gave her little electric shocks to see how her muscles responded. I'm sure I would have whined and moaned but Rachel was quiet through the whole process. Then we had a break for about 3 hours. The only other appointment today was with the radiation department for a consultation and measurements. She will be receiving total body radiation.

These pictures are of us holding our Blessing Rings. These cute rings with ribbons were given to us by a friend of mine. Monday night Rachel and I sat down and put all of our cards and notes with encouragements and prayers on the rings. This such an awesome idea and we really felt the love. These pictures are from my phone so please excuse the quality. :)

Rachel's Blessing Ring:


My Blessing Ring:

You can see part of the apartment in the background. It is nice and seems to be in a decent part of town, which is definitely a blessing.

This is the view from the back patio. Aren't the trees pretty? It is about 4pm as I am writing and Rachel and I are watching a bunny hop in the back yard.

Hair, Hair, Hair!

Since Rachel will be undergoing chemotherapy and radiation very soon we thought it was a great time to play with her hair a bit and get a new short do! Here are the pics!

Before:
After:

Isn't it so cute?!?! Very sophisticated! :)

We are leaving for Minnesota early tomorrow morning and have lots of appointments with different doctors next week. Monday and Tuesday are especially full with appointments and the other days we will be trying to get settled. I will post as many updates as I can. I will be staying in a condo that is owned by a missionary who is currently overseas. Rachel will be with me for the first week or two, and then she will be in the hospital.

More updates coming soon!

The Beginning

Rachel has a disease, Sialidosis (Type I), that is very rare and affects about 1 in 4 million live births. This is an inherited disease…passed down by a gene from each parent. Rachel started showing symptoms around the age of 16. She had trouble walking, specifically starting and stopping, and started shaking some. At first we thought she was just going through a clumsy stage of life, but the symptoms persisted and got worse. We went to our family doctor who sent her to a local neurologist. He ran tests and could find nothing wrong. He sent us to Children’s Hospital in Little Rock. Every time we went they would run tests and send us home. We would wait for results and then go back and repeat the pattern. After a couple of years and no diagnosis we decided to go to the Mayo clinic. They were able to run more tests and put everything together to find out she has Sialidosis.

This is a disease that continues to progress and there is no cure. At this point Rachel is 20 yrs old and uses a walker to go everywhere. Ataxia, a neurological dysfunction that causes lack of coordination of muscle movement, is also a symptom. This causes her to shake and makes it hard for her to write, cut her food, get on escalators, or do other things involving fine and gross motor skills. Myoclonus movements (jerky movements) are also another symptom that would continue to get worse. One example would be like when you are sleeping and all of the sudden your body jerks. But this can happen at any time for Rachel. Seizures are another symptom. Right now all we can do is treat these symptoms with medication but there is no assurance of how long this will last or how far it will progress.

Through talking with her neurologist we found out about Bone Marrow Transplant and through much research and prayer Rachel has decided this is what she wants to try. The best outcome is that this is will stop the progression of this disease. There is always a chance that there would be improvement, and ultimately this is what they always hope to see, but the doctors aren't very optimistic about this. In fact there is a chance that this will not work at all and the disease could continue its course . This procedure has been performed for several other metabolic diseases, but it still a very new procedure. She will be receiving Chemo and radiation before the actual transplant to suppress her immune system. The transplant is scheduled for Aug.7, which is Rachel's 21st birthday. From this time through the actual first 100 days of transplant will be a critical time. We are praying that her body will accept the new marrow instead of rejecting it, which can have serious consequences.

Rachel and I (Jill) will be leaving on Sunday (7/12/09) for Minnesota and we expect to be there at least through November if everything goes perfectly. Through some missionary friends I have found a place to stay, that is close to the hospital and is a very reasonable rent. This has been a growing closer to God experience for the whole family...so much of this is out of our control. We would appreciate your prayers and good thoughts as we go through this journey. We will try to keep this blog as up to date as possible so check back often!