This section contains the notes about Julie's autologous stem cell transplant.
Daily White Cell Count
Date |
Day |
White Count |
Thursday, Sep 27th |
10 |
0.1 |
Friday, Sep 28th |
11 |
0.2 |
Sunday, Sep 30th |
13 |
0.4 |
Tuesday, Oct 2nd |
15 |
0.8 |
Thursday, Oct 4th |
17 |
1.0 |
Friday, Oct 5th |
18 |
1.2 |
Monday, Oct 8th |
21 |
1.5 |
Tuesday, Oct 9th |
22 |
1.6 |
Thursday, Oct 11th |
24 |
1.9 |
Sunday, October 14th ( Day 27 ) Notes
On Friday, Julie and I came back to Mankato. Julie is feeling stronger now than she did when we left for Rochester. We'll need to watch her this week to see how see does with the kids. We are hoping that by next month she will be able to return to church.
Julie will have a weakened immune system for the next year or more so we will need to be careful. While we would love to be able to see a lot of people, we will not be able to for a while. Phone calls are welcome in the evening but they need to be short.
When we met with Dr. Gertz last Friday, he scheduled an appointment for us in a month to see how much the cancer is growing. He is planning on doing the second transplant using Julie's father's bone morrow at the beginning of January. This will be the harder and riskier transplant but is the one that holds a good possibility of complete remission. We need to wait until Julie is strong enough but it needs to happen before the cancer has grown too much.
I would ask that you would pray that we use these next two and a half months well. We have so much to do. I want to get a lot of work done. We have some things to do around the house. And we want to spend a lot of time together as a family. There is balance there that we need to find.
I plan on updating this site next after the November 12th appointment.
Monday, October 8th ( Day 21 ) Notes
Today has been a good day but it has had some bitter parts as well. Julie's white cell count went up to 1.5 today and her platelets and hemoglobin have stayed at good levels so she hasn't needed to get blood products in the last several days. They started taking her off some of the antibiotics and other drugs today. All we need is for her to be able to keep food down and for her blood counts to stay up for them to do a final evaluation and send us home.
I'd like to ask you to pray for the family of Don Bockelmann. Don was here for about a week and was supposed to have a bone morrow transplant this Wednesday to treat his ameloid. This afternoon, Don collapsed in the main hallway here at the transplant house and died later this evening. Pray for his wife Sue, their children and his brother Dave. I'd also like to ask you to pray for the residents and staff here at the house. The paramedics worked on him in the main hall for quite a while before transporting him to the hospital. He seemed tired but okay as he talked with us and the other residents at lunch. It has reminded us of how quickly death can come.
Sunday, October 7th ( Day 20 ) Notes
Seven weeks down. I think this is the longest date Julie and I have ever been on. While the days have not always been easy, it has been good to spend this much time together. As I've watched Julie during this time, she has really impressed me. It's great to see her take time to encourage and spiritually build up those around her. God has truly blessed me by giving me such a wife.
Since Julie had been doing so well the last several days, she was supposed to have today off. Unfortunately, the nausea got worse and she has lost almost everything she has eaten or drank in the last 24 hours. We ended up going to the hospital today where Julie got some nausea medicine, a liter of fluids and some potassium. Originally, they had talked about weaning Julie off some of the medicine she has been on; I'm not sure if that has changed now or not. I'll let you know what we find out what we find out tomorrow.
Please pray that we have continued peace, that we are content with our circumstances and that we have continued joy in the Lord. Please continue to pray for our children. They have been doing well and have formed some really special memories with their grandparents and aunts and uncles but the time is getting long for them. Will has been counting the weeks and is convinced that Julie is coming home this coming weekend. It is possible, but it is not guaranteed. I did also want to let you know that I thank God for all of you who faithfully lift us up in pray. It is a great comfort to know that we have so many people praying for us.
Friday, October 5th ( Day 18 ) Notes
Julie's white cell count went up to 1.2 today and her platelets and hemoglobin stayed up. The only thing she needed to get today was some potassium and some fluids. She is feeling fairly good but she has been more tired the last two days. She has also been having some nausea today.
Thursday, October 4th ( Day 17 ) Notes
We have a lot of good numbers for the day. Julie's white cell count went up to 1.0 today. Her platelet count also went to 27 which means that the platelets she got yesterday were not rejected by her body. We are expecting to see her start producing her own platelets very shortly.
Wednesday, October 3rd ( Day 16 ) Notes
Julie's white cell count went down to 0.7 today. We've been told that the movement of .1 up or down doesn't really have meaning but it would have been nice to see it continue to rise.
Julie got more platelets yesterday and it was uneventful. That's a great blessing after the problems she has had with blood products in the past. Her platelets are at 10 and they like them to be around 20.
Tuesday, October 2nd ( Day 15 ) Notes
Julie's white cell count went up to 0.8 today, which is a definite jump from the last two days. It was very exciting. Her electrolytes have been close to the low end of normal so she hasn't needed to get those by IV recently. Her hemoglobin is still doing well but she did need platelets again today. We should see her body start producing its own platelets in a couple of days and red blood cells a few days after that.
For the first time, we talked about what would need to happen before Julie could be sent back to Mankato. Basically, she needs to be producing all of her own blood cells, be at levels where they would not need to give her additional blood products and have enough white cells where she wouldn't be at a huge risk for infection.
We shaved Julie's head today and that was hard for her. She had lost about 75% of her hair already and was losing more each day so she decided it was time. Even though she knows it is a small thing in the grand scheme of things, she is surprised at how hard it was to do.
Sunday, September 30th ( Day 13 ) Notes
Well, today marks the end of our sixth week here. In three more days, we will have lived in Rochester longer than we lived in our new house before coming here. Time has gone both slowly and quickly. We are looking forward to the time when we can go home.
Today, Julie has felt fuzzy again. She has had periods where she can't gather her thoughts and she can't remember something that was recently told to her. She had periods like this while we were still in Mankato. In talking to Dr. Gertz, he thinks it us caused by some of the medicine that she has been on. Please pray for Julie about this; times like this really bother her.
Julie's white cell count went up to .4 today. Her hemoglobin has stayed above 8.0 for several days now so she hasn't needed red cells recently. Her platelets were at 9 so they gave her one of the two units of matched platelets they have for her here. She is still inpatient today but we think she will get out tomorrow and will return to being treated as an outpatient.
I again ask that you would pray for Alan. He is at day 27, two weeks ahead of Julie. He has really had a hard time with his transplant and has been inpatient for all but a couple of days of his transplant. Also, pray for his two sisters who are taking care of him.
Instead of sharing something from the scriptures we are reading (First Peter), I wanted to share parts of a hymn that I have been thinking about the last couple of days:
Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
Saturday, September 29th ( Day 12 ) Notes
It's been a rather busy time the last several days and three big things have happened in that time. First, Julie started running fevers Wednesday night. By Thursday morning, her temperature hit 101.9 and we went into the hospital at 6:00 am. They started treating her with IV antibiotics to see if they could continue to treat her as an outpatient. By the time the blood work came back, it was clear that she was going to need more IVs and blood products so she decided to be admitted.
This week so far, Julie's platelet count has been low, as you would expect. However, when they gave her additional platelets her counts did not increase. We have found out that her body is rejecting all of the platelets they give her, but they need to keep giving her platelets to control the bleeding. They bran some tests and found that they need to give Julie platelets that are more closely matched. There are two such units here at Mayo so they want to use them judiciously.
We did have some exciting news yesterday. Julie's white count went up from .1 to .2 and it stayed at that level today. It is not a large jump but it is a change in direction and it is good to see. It could still drop back to .1 but we should be on the way up.
Julie has had nine units of platelets
Wednesday, September 26th ( Day 9 ) Notes
The past three days have been a little hard. The days at the hospital are getting longer as Julie is in her third day of having a white cell count that is immeasurable. This morning began with a two hour nosebleed; her platelets counts are at about 2% of normal, which is to be expected, but it also means that when she starts bleeding, she doesn't stop quickly. They had given her platelets Monday night and yesterday as well but her platelet count still continued to drop. She got two more units of platelets today. We'll see what her counts are tomorrow.
As Julie was getting some additional potassium tonight, she got the shaking chills again and began feeling really nauseated. With the big days we have been having this week, she is becoming increasingly tired and feeling weaker.
These last couple of days have also been rather hard emotionally. We usually like being around the transplant house because we get to see people go home. Monday, we learned that a man who had been in Rochester since April for a stem cell transplant died on Sunday. Today, while Julie was at the hospital, a BMT patient died. And today, when I was checking out the coming college hockey season, I found out that Shawn Walsh, the 46 year old head coach of the University of Maine's Black Bears, died on Monday, He had gone through a stem cell transplant and a bone morrow transplant, which is the same course of treatment Julie is going through. We know that these are different people with different stories but it's still disturbing to hear these three stories in three days.
We are still very encouraged with how things have been going so far. To be outpatient on day nine is pretty amazing. While a few people can go through the entire transplant as an outpatient, most people end up being hospitalized sometime between day five and seven. We have had incredible peace during this time but it has been hard. Please pray that we will have continued peace and that we will have the strength we need for each day.
Monday, September 24th ( Day 7 ) Notes
Well, we have just finished week five of our time here in Rochester. Julie has been doing very well so far. Today, her white cell counts bottomed out so we now wait for her bone morrow to regenerate. We'll know that has happened when the white count comes back into normal range, which should happen in two to three more weeks. Normally, people start growth factor shots on day six but since Julie had so many problems with them during the collection process. Not having these shots should only add a day or two to the time it takes engraft.
Tonight, we are in the hospital so Julie can get two units of red cells and a bag of platelets. We got in at 3:00pm and we should be done around 11:00pm. We are told to expect that we will have two appointments per day soon.
Continue to pray that Julie has continued health and strength as she is going through this low point.
Friday, September 21st ( Day 4 ) Notes
Julie had another blood test today and things are looking good. It has been really nice that she hasn't needed to get extra electrolytes or blood products since the weekend. When she needs such things, she is usually in the hospital from two to six hours. While that might not sound like much, it can be tiring.
I have a couple of rather specific prayer requests for Julie today. Part of what the chemo will do is cause sores in the mouth and esophagus making it hard to eat and drink. Julie is beginning to have some problems with this. She needs to keep up her fluid and calorie consumption or she will need to spend time in the hospital getting IV fluids and nutrition. Usually, people get pain meds to help them to continue to eat and drink. So far we have not found anything that works for Julie. Everything they have tried so far has made Julie extremely nauseous so she can't keep anything down and the vomiting further irritates the throat. So apart from helping the problem, they actually make it worse. We would like to either find something that works or have the pain lessened so Julie doesn't need anything.
Thursday, September 20th ( Day 3 ) Notes
All we had today was another appointment to check levels. White cells and platelets continued to drop as expected. Julie started to feel the effects of the chemo today. She is getting increasingly tired, sore and nauseated. She still has good resolve but it's getting harder for her to keep it. Pray for continued strength and fight for her.
Continue to pray for Mike. He will be having chemo on Sunday and his transplant on Monday. He will have dialysis every day starting tomorrow. As I had mentioned yesterday, he would prefer not to be the first to receive this kind of treatment at Mayo
Wednesday, September 19th ( Day 2 ) Notes
Everything has been going smoothly so far. Julie's blood counts are good and so are her electrolytes. Today, we saw a drop in Julie's white cell count, which means the chemo is beginning to take effect.
Besides our normal prayer requests for ourselves, we have two additional ones. We have asked for prayer for Mike before and we ask that you keep him in your prayers. They have been working with his kidneys for a week and a half but they are still not improving. Dr. Gertz is thinking that it might be best to put him on dialisis and go ahead with the transplant anyway. The theory is that with the elimination of the myeloma, the kidneys will be able to function normally again. If this does not happen, Mike would be looking at a lifetime of dialysis. It would be the first time this has been tried here at Mayo but this has been done in Boston. The doctors will be talking about this tomorrow.
Pray also for an eight year old girl named Anne who is staying here at the transplant house. On July 3rd, she had a heart transplant after her heart was attacked by a virus. She has been recovering very slowly. I know that many adults here struggle with what is happening to them and can only imagine how hard it must be for a child.
Tuesday, September 18th ( Day 1 ) Notes
Yesterday morning, Julie received her cells back. The actual infusion of cells only took 40 minutes but we were in the hospital for 12 hours while they pumped four liters of fluid through her. Now, we simply watch and wait. Over the next three to five days, her bone morrow will die along with all of the blood cells that were in her body Sunday when chemo was given. Her blood stem cells she was given yesterday will engraft and will rebuild her bone morrow. This typically takes two to four weeks. It is the period in between that she will be very prone to infection and when she will feel really sick. She will receive a lot of blood products during this time.
I realized I needed to be clearer in what we are expecting in the future. I reported that Julie’s dad is a bone morrow match for Julie but that does not change anything with the transplant she is currently going through. Right know she is having an autologous stem cell transplant, which means that her immature blood cells were collected, her bone morrow was destroyed and the collected cells were returned to rebuild her bone morrow. This is a relatively low risk procedure (5% mortality) and it does a lot of good but there is only a 5% chance of this leading to complete remission of the cancer. In 90% of the cases, the cancer is back in 3 to 5 years. Since Julie is young, they want to treat her more aggressively to bring the cancer into complete remission; this is where Julie’s dad comes in.
With organ transplants, the immune system of the recipient attacks the donated organ. With a bone morrow transplant, the donated bone morrow attacks the recipient, which is called graft verses host disease and is the main complication to a bone morrow transplant. The up side of this is the donated bone morrow can also attack and destroy the myeloma cells, which is called the graft verse myeloma effect. There is a limit to the amount of cancer that can be removed in this way. Before the current transplant, 90% of Julie’s bone morrow was involved in making myeloma cells. After the current transplant, that should be decreased to a level where the graft verses myeloma effect from a second transplant could bring about complete remission.
This second transplant is called a mini-allogenic bone morrow transplant. It does have higher risks (20% mortality) but if it is successful, her father’s bone morrow will be used to create her blood from then on. There is a high probability that her body would then destroy the myeloma cells when they reoccur. As a side benefit, this could go far in reducing her asthma problems. Since her father does not have any allergies, Julie should not have any after the transplant, which would eliminate the allergy component of her asthma.
This second transplant needs to be done shortly after this first transplant before the amount of myeloma increases. If all goes well with this first transplant, the second one probably take place in January. I hope this clears things up. If you still have questions, please send me an e-mail because chances are others are wondering about the same things and I could clarify things for everybody.
Please continue to pray for Julie during this time. Right now, she is feeling great but hard times are coming. Pray that she has strength to get through each day and does not look ahead to the trouble of the next day but to the hope of health at the end of all this. Pray for our children. They are being well taken care of by their grandparents and aunts and uncles but they are still missing us and our home. Julie’s parents could use your prayers as they watch the kids for the next couple of weeks.
Sunday, September 16th ( Day –1 ) Notes
Today marks the end of our first four weeks here and probably marks the halfway point for us as well. Today, Julie had her high dose chemo and tomorrow, she will get her cells back. We have definitely crossed the point of no return.
Julie is feeling the best she has in a month and a half. She is able to walk upwards of a mile a day, she is keeping food down and her color is good. It’s hard to believe that by the end of this week she will be hitting bottom again and starting to rebuild her strength again.
We’ve been rereading parts of Philippians and have started the book of James. Continue to pray for Dave Carlson. Mike is still waiting for his kidneys to improve so he can have the transplant. Pray for strength for Julie as we move through this second phase. Pray for peace for us and for our families.