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7/28/08 |
Kevin went to the family doctor because he thought he
pulled a muscle and it wasn't getting any better. The Dr. sends Kevin to the emergency room
at Oakwood Annapolis hospital because of sore calf. Hospital does a Doppler on his leg. Doppler
confirms blood clot. Kevin is admitted, and treatment for the blood clot
starts. Routine blood work is ordered. Technicians don't like what they see. |
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07/29/08 |
All blood tests are redone; they still don't
like the results. Attending physician calls in Hematologist/Oncologist.
Hematologist/Oncologist reviews results and advises Kevin and Beth that he
strongly believes that Kevin has Adult Acute Lymphoblastic Leukemia. If it goes untreated, Kevin is told he will
not see Halloween. |
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07/30/08 |
A Bone marrow biopsy is performed by Hematologist/Oncologist
which is the same doctor that gave Kevin the diagnosis the day before. The
doctor has already scheduled an appointment with Dr. Nalini
Janakiraman, Leukemia specialist at Henry Ford
hospital. |
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08/01/08 |
Kevin, Beth, mom and dad meet with Dr Janakiraman
and her team at |
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08/02/08 |
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08/03/08 |
Since Dr. Jana tells Kevin that his hair will start
falling out do to the aggressive treatment he decided to have Carrie help him
cut his hair and he shaves his beard so if he comes home from the hospital
with no hair he won't scare her. He'll leave and come home looking the same,
after not seeing her for a week. Carrie tells him he looks just fine with no
beard and a buzz cut. Note: She's never seen him without a beard. Kevin did
make a somewhat derogatory comment about his heritage because he noticed he
had a butt chin without the beard. |
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08/04/08 |
Kevin, Beth and Mom had to be at the hospital today at 8 am.
Kelly went to the hospital on her lunch hour and it took her about an hour to
find out were he was. He'd been sitting in a family waiting room with a
couch, 3 chairs and a TV waiting for his room. Apparently, they enjoyed
watching Jerry Springer before she got there because they kept laughing about
what was on. Kelly was surprised to see Kevin had shaved, had his glasses on,
and buzz cut his hair, he has a baby face, she just haven't seen it in forever.
He did comment on his butt chin he didn't know he had and we laughed about
yeah you got that from your dad. We ended up playing a game of Euchre and we
were tied when Kevin ended up pulling out a loaner and Kevin and Kelly beat
Beth and Mom. They find out that the
port needs to be scheduled a couple weeks in advance, oops, so it's
rescheduled for August 21, 2008. They wait for a room for Kevin until 3 pm,
oops. Kevin gets settled in, they end up starting the pick line and start him
on fluids in preparation for chemo tomorrow. Beth spends the night with
Kevin. |
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08/05/08 |
Kelly visits Kevin on her lunch hour. Kelly brings a case
of Gatorade, since he's told he needs to flush the chemo out as fast as
possible and fluids and hydration are the key, and lunch, which was Chicken Swarma. We all got to hear the stories of how mom would
know when dad had swarma and falafels for lunch
because she could smell him walk in the back door. Chemo treatment
starts at 2 PM and runs for three hours. |
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08/06/08 |
The next Chemo treatment starts at 2 AM and runs for 3
hours. Kelly visits Kevin on her lunch hour. The next Chemo treatment is at 2 PM and runs for 3 hours. |
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08/07/08 |
Same as yesterday again Chemo starts at 2 AM and runs for
3 hours. Kelly visits Kevin on her lunch hour. Again, at 2 PM the next Chemo
treatment starts for 3 hours. Mom, Dad, Chris, and Lisa go to the hospital
for a visit. |
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08/08/08 |
Chemo treatment starts again at 2 AM for 3 hours. Kelly
visits Kevin on her lunch hour. He started both andriamycin
(red devil) and oncovin chemo at 2 PM and lasts for
22 hours. |
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08/09/08 |
Chemo treatments are complete for this week. Now is just
observation and blood draws to monitor Kevin's status. Kelly and Michael
visit Kevin at the hospital. Due to
all the construction it takes her forever to get to the hospital. Since she's
bringing lunch he does call to find out where it is. Kevin was getting tired
and needed to rest. |
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08/10/08 |
Still on Observation and blood draws. Mom & Dad visit
Kevin and bring him lunch. Subway was the order of the day but without any
produce. Kevin is classified as Neutrophilic precautions. Neutrophilic
precautions are when Kevin is at the highest risk for infection. This is very serious and precautions need
to be followed. No produce, plants, or flowers are allowed. Strict hand
washing guidelines must be followed. Kevin is tired and smells are starting
to get to him. He makes mom put Beth's Chinese food outside the door. Kevin
sleeps most of the time mom and dad are there. |
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08/11/08 |
Kevin is supposed to leave the hospital in the am. Kevin calls Kelly and tells her to bring
him a Whopper. He's craving a Whopper,
but no lettuce or tomato, still under Neutrophilic precautions. 10 minutes
later Kevin calls Kelly and says he's been sprung and he's getting his own
Whopper. Kevin finally leaves the hospital to go home around 4 PM. |
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08/12/08 |
Beth's Birthday. |
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08/13/08 |
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08/14/08 |
Kevin goes to his twice-weekly blood draw. His numbers are
low and he's warned he may need a blood transfusion when he comes back on
Monday. Kevin is still under Neutrophilic precautions so there is no Up North
this weekend. Kevin gets a dose of Chemo, which lasts about 15 minutes. Dad, and Chris go over to Kevin's house for dinner. Kevin
barbecues steaks. Chris and dad put up a screen door in the kitchen. |
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08/15/08 |
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08/16/08 |
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08/17/08 |
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08/18/08 |
Kevin and mom go to hospital for blood work, Kevin is weak
and pale. Kevin and mom disagree with nurse's interpretation when she says
that his blood counts are ok and no transfusion is needed. Kevin and mom go
home. The nurse calls and tells him that she read his blood test results
incorrectly. Kevin needs to come in tomorrow morning for a blood transfusion
and platelets, oops |
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08/19/08 |
Kevin and mom go back to the hospital at 8 AM for transfusion
of 2 units of blood and platelets. Kevin has his appointment with Dr. Jana
and round two of Chemo will start on next Monday as long as his counts are
good. Kevin gets the results of Kelly's blood work and she's only half a
match for Bone Marrow transplant, they're both upset. Kevin's feeling much
better. Kevin talked to the nurse supervisor about yesterdays screw up with
results. As Kevin put it "people die
when hospitals screw up". Kelly calls
Kevin later that night to see if he is feeling better with the new blood, he
sounds great and is feeling much better. |
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08/20/08 |
Dad visits Kevin at his house. Mom there since Sunday
night, running Kevin down to the hospital. Mom cooks dinner. Kevin's friends,
Greg, Jason, |
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8/21/08 |
Mom and Kevin are back at the hospital for blood test and
to have his port put in his chest for the remainder of his Chemo treatments.
It's another all day event. The surgery for his port doesn't start until
about 1 pm, it's a 45 minute surgery, plus 2 hour recovery time. The nurse informs mom in the recovery room
that they could not get Kevin fully sedated. Dad and Mom are talking on the phone as they are going through the
Burger King drive thru - Kevin needs his Whopper again. He's done eating in no
time flat and tells dad he never felt anything because of the local and he's
feeling pretty good after surgery. Mom comes home because school starts and she
can no longer stay at Kevin's. |
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08/22/08 |
Lisa visits Kevin and brings him lunch at home. Lisa
notices Kevin's hair is really starting to fall out. Kevin is feeling much better and decides
they need to get away before he checks back into the hospital for round two
on Monday. They head Up North to his friend Clif's
place. |
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8/23/08 |
At Clif's place |
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8/24/08 |
At Clif's place. Returns home in
the PM. Getting ready for round two of Chemo tomorrow. Kelly spends the night
so she can take him downtown to the hospital in the morning. |
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8/25/08 |
Kelly & Kevin at the hospital at 8 am. |
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8/25/08 - 08/31/08 |
Kevin went in to Henry Ford Hospital Monday morning for round two of Chemo. This round of Chemo was to attack any bad cells in the spine and brain. Kevin did very well, with the treatments, and was sprung from the hospital Thursday night. Beth was the getaway driver. Kevin said this round of Chemo really took it out of him, compared to the first week. He spent a quiet weekend at home with Beth and Carrie. His next visit to the hospital is schedule for Thursday 9/11 to meet with his doctor. Nurses will be coming to the house twice a week to take blood for the usual tests.
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9/01/08 - 09/07/08 |
Kevin continues to do pretty well. He is home now, and had a nurse come out to take blood twice during the week. His counts were a little low, but he didn't need a transfusion this week. Kevin says when he does get one, he usually feels "like a new man'. Doctor Jana did say he could go up north to Clif's place for the weekend. Being up North with his friends does wonders for his frame of mind. He has a doctor's appointment on Thursday and if all goes as planned, he will be back in at Henry Ford on Monday, Sept 15th for the next batch of Chemotherapy.
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9/8/08 to 9/14/08 |
Good week. Lisa took him down to Henry Ford for his blood work on Monday. Looking good, no transfusion needed. Beth took Kevin to his appointment with Doctor Jana on Thursday. She is happy with his progress. He had more blood work, a spinal tap to check for the cancer in his spine, and received Chemo directly into the spine. Best news of the week was both Chris and Lisa are matches for the bone marrow transplant, which is still months away. Kevin, Beth and Carrie got away for the weekend up at the cabin before checking in to Henry Ford on Monday for a big week of Chemo. Kevin will be lucky to get out by Saturday.
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9/15/08 to 9/21/08 |
Kevin spent last week in the hospital, escaping Thursday afternoon. Beth was the getaway driver once again. Beth got a call Thursday morning from Kevin after Dr. Jana stopped to see him. Kevin's spinal tap test results, which were done to see if the leukemia had spread to his spine and brain, all came back NEGATIVE. Dr. Jana said, "We now have everything we need to beat this". (Not that any of us thought otherwise... just more comforting when you hear it from our doctor) Another "great news" day because we believe this positions Kevin even better in the 50% that survive this cancer.
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9/22/08 to 9/28/08 |
Overall Kevin had a very good week. His counts were up so he did not need a transfusion. However, the week did not start off that great. Kevin called the home care nurse at 8:30 Monday morning to find out what time they would be out for the blood draw. She knew nothing about it, but would check with the office. Kevin missed the call from the supervisor looking for more info at 9:45, but found the message at 2 PM. He called, and the supervisor said they had no order, but she would check. Apparently the order for blood draw never made it to home care. At around 3 PM Kevin was told to go to Henry Ford Hospital in West Bloomfield, 25 miles away, for the blood draw. He was told he needed to get there right away for them to do the draw, so Kevin decided to drive himself. When he got to the hospital, they knew nothing about the blood draw. After a little while things got sorted out and Kevin got his blood draw. They told him they would call if he needed a transfusion. On the way home, Kevin threw up all over himself and the car. He blamed it on some bad food he had that morning, not Beth's cooking, but some fast food. Dad blames it on the stress and aggravation caused by the day's events. Dad didn't find out about any of this until that night and the following morning, at which time he called and talked to the social worker at the hospital, and in his usual calm collected manner let her know what he thought of the situation. We're not asking for any special treatment, but just that people do their job. There were problems that Kevin had with the home care nurses that Kevin finally decided to share with us and the hospital personnel when he went for his blood work on Thursday. Lisa was with him and was beside herself with the stories of incompetence. When these people make mistakes, other people can die. Kevin will be going to Henry Ford hospital in Detroit from now on for the blood draws. With all of this Kevin still had energy to spend time with Chris and Steve over this past weekend.
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9/29/08 to 10/05/08 |
Kevin had another good week for the most part. On Tuesday, Beth took Kevin to Henry Ford for his blood work and appointment with Dr. Jana. Blood work results were good, and no transfusion was needed. Dr Jana did another bone marrow biopsy, third one in two months. Unfortunately, the sedation didn't work too well so Kevin felt pretty much everything. I saw his reaction with the first bone marrow biopsy when he was fully sedated. I can only imagine the pain he experienced this week. The week got better, with him feeling better each day and Beth, Carrie and him going up north to Clif's place, which always makes him feel better. Kevin, Beth and Carrie joined the family at Max & Erma's in Canton to celebrate mom's birthday on Sunday afternoon. Time to head back into the hospital Monday morning for more Chemo. We call this the "B treatment week".
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10/6/08 to 10/12/08 |
Kevin got to his room pretty quick Monday because they did not wait for his blood work results because his blood results were so good last Thursday. Some pretty funny stuff surfaced on Monday as the Christesen clan was comparing notes on Kevin's check in process. We all went out to dinner Sunday night at Max & Erma's in Canton to celebrate a couple birthdays, specifically Grandmas. Kelly tells us on Monday that little Marty didn't realize that it was Kevin having dinner with us. Kevin is bald and is wearing his glasses, because no contacts are allowed, and is a little puffy from some of the medication. The kids have never seen him without his beard, and Kevin hasn't worn glasses in years. Little Marty thought he was a friend of Grandpa's. Then the question to Marty was, what did he think of Aunt Beth hugging and rubbing "Grandpas friends" back at different points at dinner? Beth was comforting Kevin because he wasn't feeling that good because of the sodium bicarbonate pills he has to take before he starts what we call the "B" round of Chemo. Little Marty said he wasn't paying attention, and got a little embarrassed when Kelly told him it was Kevin.. Then we find out that Ashley asked her dad who the new guy was at her birthday party the week before. Then Lisa tells us that Drew didn't recognize Kevin at Ashley's party. We had a few laughs, which you have to do, and then we got back to the serious side.
Kevin had a great week. On Wednesday he found out from Dr Jana his results from the bone marrow biopsy from last week - No cancer cells in the bone marrow. Chemo is working. He needs to continue treatments, and do the bone marrow transplant, but long term prognosis is looking better every week. Another "good news" week.
So how could the week end any better, with a great day on the golf course. We had our golf outing on Sunday and the weather could not have been better. The fall colors just added to the enjoyment. Kevin made it to the course later in the afternoon and hit a ball or two with a couple different groups, and stayed for dinner and the awards. A great time was had by all. Thanks to the volunteers, sponsors, and to all those that came out. We had 85 golfers and another 30 people for dinner. We had a certain volunteer at the "cash on the green" hole that was getting a beer from every foursome that came through. Needless to say that after 20+ groups that volunteer had the best time of anyone. There was one minor problem. We had a golfer who had a hole in their bag of marshmallows; don't ask me why you would have a bag of marshmallows on a golf course, and was dropping marshmallows at the most inopportune times on the course. There were a couple of times I thought I hit the shot of my life, only to find that it was a marshmallow. What a great day!
Thanks again to everyone for their support!
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10/13/08 to 10/19/08 |
Kevin had a good week. Many discussions about the golf outing. People continue to talk about it, and what a great day it was. Lisa took Kevin to Henry Ford Hospital for his blood work on Tuesday, and Friday. Kevin was feeling good, so they figured they would be in and out of there in quick order. No such luck on Friday. His blood counts were down and he needed two units of blood, and six units of platelets (platelets from six different people in one intravenous bag). They each take about an hour so they didn't get out of there until 4 pm. Kevin, Beth and Carrie went to the apple orchard on Sunday. Carrie got a skunk painted on her cheek. She is into skunks since she saw one when taking a walk with her mom to the park during the summer.
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10/20/08 to 10/26/08 |
Lisa took Kevin to Henry Ford Hospital for his blood work on Tuesday. All went well because of the transfusions from prior Friday. Kevin was feeling pretty good most of the week. Chris took Kevin to Henry Ford for Friday's blood work. Counts were a little low, but still ok. Kevin, Beth and Carrie went up to Clif's place for the weekend. Kevin and Clif did a little fishing. Kevin finally caught a fish. Kevin is getting himself ready for the next round of Chemo.
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10/27/08 to 11/02/08 |
Lisa dropped Kevin off at Henry Ford Hospital Monday morning to start round 3A of Chemo. Things got a little behind schedule on Tuesday because one of the ports was blocked. Kevin has a dual port system. He needs two ports because certain drugs cannot be administered into the same line. Kevin received x-rays, but the x-ray showed no kinks in the line. The next step was to add an anti-clotting drug to the port to clear it out. There were delays in getting the drugs from the pharmacy to unblock the port. The drugs did not arrive until late Tuesday and were then being administered by the night nurse. It was obvious that the nurse was having trouble getting the drugs into the port, Dad and Mom were there observing. As of Wednesday morning, Kevin's port was still blocked. Kevin was then sent down to the same group who put his ports in. They discovered that there was no blockage in the port, but that the nurses did not insert the needle into the port correctly. Boy, does that build the confidence. Other than some aggravation and frustration, Kevin did ok and got out of the hospital Friday afternoon in time to see Carrie in her skunk costume. He is pretty run down, but is happy to be home. Rumor has it that there are pictures and we will see some shortly. She sure had fun spraying people while trick or treating.
Finally, this was a difficult week for all. We are extremely thankful for that blood clot. That allowed Kevin to be diagnosed and begin treatment immediately. The doctor's first assessment of Kevin's condition was that he would not live to see Halloween without aggressive treatment. He's made it past Halloween, and we have faith he will live to a ripe old age to enjoy his grandchildren.
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11/03/08 to 11/09/08 |
Lisa took Kevin to Henry Ford Hospital for his blood work on Monday. Counts were good and they were out of there in less than an hour. Lisa got sick and had to find another ride for Kevin's Thursday blood work appointment. Damian Krimm was happy to take him. Counts still good. He is getting a little bored watching TV so mom and dad picked up a couple things over the weekend to help him pass the time. A dollhouse he can put together for Carrie, a plastic AH helicopter model, and a 1,000 piece jigsaw puzzle.
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11/10/08 to 11/16/08 |
Lisa took Kevin for his blood work on Tuesday. All's good. Thursday, Beth went with Kevin for his blood work and meeting with Dr. Jana and the Nurse Practitioner, Sarah that will be handling the transplant. Originally we understood that Kevin would need 6-8 full cycles of Chemo, which we took as meaning he would need to get to 6B - 8B Dr. Jana clarified that she meant 8 total individual rounds of Chemo, 4 rounds of cycle A and 4 rounds of cycle B. Kevin started 3B on Monday 11/17, which only leaves him 4A starting 12/8, 4B starting 12/29, and then transplant.
Sarah and Dr. Jana stated several times how well Kevin is taking the Chemo. Kevin's only complaint was that he feels so tired, more consistently. Dr. Jana looked at past blood work results, more specifically his platelet and white blood cell levels, after his last cycle B treatment and stated that she may lower the dose of Chemo on the upcoming and remaining cycle B's Since he's in remission, let me repeat that REMISSION, there is no reason to drop his numbers quite so low. Kevin will also be getting another dose of Chemo administered through his spinal fluid sometime between now and the end of 4B.
Following Cycle 4B, we prepare for the transplant. It will take place approximately 6 weeks after completing cycle 4B. That puts us mid-February. He will get a bone marrow biopsy after completing Cycle 4B and then again after the transplant. His brother Chris will be required to take shots daily (sorry Chris), however, Dr. Jana didn't say for how long. And there are other requirements for Chris but we haven't talked in detail of those yet. Kevin will be in the hospital for 4 weeks. He will not be in "isolation" as we previously thought. His restrictions will be very similar to what they are now when he goes in for Chemo. No fresh fruits/veggies, no kids under 12 yrs., etc. He will be allowed visitors
We are so fortunate. Thanks to all for your continued prayers and support.
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11/17/08 to 11/24/08 |
The week back at the hospital started like a lot of the others, Lisa taking Kevin to Henry Ford for cycle 3B of Chemo. Kelly bringing lunch, Beth there a couple nights, and mom and dad visiting one night during the week, and making sure we get the dinner order before we go up. Kevin had a pretty good week. He escaped Thursday afternoon with Beth doing the driving. He wasn't in the bone marrow transplant wing this week, but in the outpatient Chemo wing. Bone marrow wing was booked. Turned out ok. Kevin was a little tired and had a number of headaches over the week end. Sunday was a pretty good day, with Beth Carrie and Kevin digging out some knick-knacks for Christmas decorating. Kevin said Carrie was really into it. He is really looking forward to enjoying Christmas with Beth and Carrie this year.
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11/25/08 to 12/01/08 |
Kevin went for the usual blood work on Monday and everything looked good. Kevin, Carrie and Beth spent Thanksgiving at mom and dads with the rest of the gang. You could tell he was not feeling all that great, but he didn't say much. At about 10 p.m. that night, he started experiencing some severe bone pain. This is a side effect of the shots he gives himself following chemo treatments. He has Vicodin for the pain, but this time they were not working even after taking the max allowed. He had a blood draw scheduled for 8 a.m. Friday morning. Levels were not very good and he required a blood and platelet transfusion. While receiving the transfusion, his nurse and doctor were trying to manage his excruciating pain with first a shot of morphine, and then a morphine drip. Both were unsuccessful in relieving his pain. They then prescribed Kevin a pain killer called Oxycontin. After taking an Oxycontin, and then a Vicadin, Kevin's pain finally subsided. Unfortunately, no sooner did his pain subside and his transfusions were complete (8 hours later), Kevin spiked a fever and was admitted immediately to check for an infection, which can be life threatening with his counts so low. He spent the weekend in the hospital and got out Monday morning.
Monday morning, Dr. Jana visited Kevin's room. She indicated that his platelets may not recover as fast due to the chemo building up in his body, which could ultimately delay the two remaining rounds of chemotherapy by a week. Although Kevin would like to get chemo over as soon as possible, this is actually ok news. If chemo is delayed next week, there is a good chance he will now be able to attend the Dinner Dance. When he goes in next Monday, they will test his platelet level and decide at that time if he'll be staying for chemo or returning on December 15.
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12/1/08 to 12/7/08 |
As most of you know, Kevin got out of the hospital on Monday, 12/1 following a rough weekend that started when he went down for blood work on Friday. He had a pretty uneventful week, with blood work on Thursday being OK, but questionable if his levels would be where they needed to be in order to be admitted to the hospital on Monday to start 4A treatment.
Also, we will be going to bi-weekly updates after this week.
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12/8/08 to 12/28/08 |
Kevin had a good, uneventful week doing his Chemo treatments, and getting out on Friday 12/12. He rested up and made it to the dinner dance on Saturday, 12/13. He had a great time visiting with family and friends for most of the night. He said he really appreciated so many in the family coming out from Chicago as he hadn't seen a lot of his Aunts, Uncles and cousins for a number of years. We all appreciated and enjoyed the presence of the Chicago contingent. We have it on good authority that they had a fine time as well.
12/15 to 12/28 went very well, with his twice a week trips to the hospital for the blood work all going very well. Kevin and Beth had a great Christmas morning with Carrie at home. This was an extra special treat as Carrie has really gotten into Christmas and helped with all the decorations. We had a great Christmas celebration at mom and dads on Christmas afternoon with a great meal, as usual. Dad got the most unusual gift, a complete dinner for ten of Portillio's Italian Beef, Italian bread, sauce, all the peppers and the beef.
I probably need to explain the significance of the Italian beef. Italian beef sandwiches are very common and popular in Chicago, and we have found nothing comparable in Michigan in the last 30 years. So, every time the Michigan contingent of the Christesen family goes to Chicago, we always make a point of getting a Chicago hot dog and an Italian beef sandwich at one of the many places that serve them, Portillo's being one, and Wojo's is the other favorite.
We will be celebrating Kevin's last week of Chemo with some Italian beef sandwiches in the next couple weeks.
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12/29/08 to 01/11/09 |
Kevin went back in the hospital for his last week of chemo on Monday, December 29th. Chris dropped him off. Mom and dad came up to visit him on Tuesday and Kevin welcomed the New Year with Beth at the hospital. He was allowed to come home on New Year's Day after he had a "fill up" (transfusion) He was home for Carrie's fourth birthday (Sunday, January 4th) but the real celebration will be in conjunction with Kevin's birthday on Sunday, January 11th.The following week was a difficult one for him. He went for his twice weekly blood draws thanks to Lisa. Counts were dropping lower and lower but did not need any tranfusions that week. Everyone enjoyed the Portillo's Italian Beef sandwiches on the 11th at Kevin's house for the birthday celebrations. We had a new baby at the birthday celebration - Andrew Fiedor came to the party. He was the youngest one there - just 12 days old. The "big" appointment with the oncologist is on Thursday, January 29th to set up the bone marrow transplant.
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01/12/09 to 01/25/09 |
Kevin really had an uneventful two weeks. He had his twice weekly blood draws and things were good. Kevin even was able to go up to the cabin for the weekend of the 16th. He felt great after taking a spin and a short trip with Beth on his snowmobile. It did wonders for his spirit. He is hoping to spend sometime up there with some of his snowmobiling buddies again before he goes in the hospital for the month. Big appointment is Thursday, January 29th with the oncologist. Look for the upcoming news in the next progress notes.
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01/26/09 to 02/08/09 |
The big appointment was on Thursday, January 29th with the oncologist to finalize the stem cell transplant. Kevin went up north for a few days with Beth and Carrie afterwards and is meeting some other friends up there the weekend of the 6th before he starts the numerous appointments and procedures. Chris had an appointment on Tuesday, February 3rd for a complete physical to make sure he is healthy. Kevin has appointments for another bone marrow biopsy, chemo injected into the spine, another port placed in the right side, Muga scan to check the heart, appointments with the radiologist and psychologist before he goes back in the hospital on Saturday, February 28th. He starts off with two days of chemo followed by four days of radiation twice a day. Meanwhile, Chris takes Neupogen shots to stimulate the stem cell production starting on Sunday, March 1st for five days. On the fifth day, Chris goes to the hospital to give the stem cells (a 3 -4 hour procedure) and they go directly into Kevin. This is the big day - Friday, March 6th when everything comes together. Please keep the prayers coming we are not out of the woods yet. It takes approximately 2 - 2 1/2 weeks before they will know if Kevin's body is accepting or rejecting the stem cells. The biggest obstacle to overcome after the transplant is GVH (graft versus host disease - rejection) We are hoping and praying that all goes well and that Kevin will be home in time for Easter. Next week we will outline what procedures Kevin has had.
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02/09/09 to 02/22/09 |
Kevin returned from his long stay up north on Monday, February 9th. He went to the hospital on Tuesday for another bone marrow biopsy. Lisa drove him and Kevin reported it was the worst one yet! The needle slipped inside while they were trying to withdraw the bone marrow. Lisa drove Kevin back down to Henry Ford on Thursday for a MUGA (heart) scan and a pulmonary function test as well as a kidney function test. They actually finished ahead of schedule and were out of there quickly. The second week was appointments with the radiologist and the psychologist. Kevin and Beth played cards with Lisa, Steve and Chris on Friday night. He has a few more procedures this coming week.
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02/23/09 to 03/08/09 |
These have been a very busy two weeks for Kevin. The first week he had appointments for measurements with the radiologist for the radiation treatments and on Friday, the 27th he had another port (catheter) placed under the collar bone on the right side. This is a triple port this time. The middle one is a little larger just for the transfusion of the stem cells so they are not damaged. Kevin reported to the hospital at 2 p.m. on Saturday, the 28th. He began with two days of potent chemo on Sunday and Monday (ten times the doses he was getting before) Monday through Friday he had twice a day radiation. The week had been very difficult for him. He is tired but has had trouble sleeping because at the same time he has been "wired". He is experiencing sores in his mouth and swollen glands in his neck.
The big day was Friday, March 6th. Chris had been taking daily injections of Neupogen for five days prior to stimulate the overproduction of stem cells which caused him some days of excruciating bone pain, especially where he had sprained, broken, had surgery or dislocated something. He finally got some relief taking 750 mg extra strength Vicodin every four hours. Chris showed up at 8 a.m. in the morning and they started taking the stem cells out around 9:30 a.m. through his left arm. The blood then goes through a machine that separates the stem cells and puts the rest of his blood that is not needed into his right arm. The process usually takes 3 - 4 hours and he finished at 12:30 p.m. They were hoping to get 3 million stem cells. Chris did a great job and gave them 5.39 million (It's a good thing they got so many because he told them they might have to get Lisa for the next batch). After Chris' procedure one of the PA's gave Chris a half of a pin that said "I am a giver of life". Kevin got the other half, which read "I am the receiver of life", after his procedure.
The stem cells are then processed by the lab and were ready to be given to Kevin after his last treatment of radiation. The stem cell infusion process started around 4 p.m. It was over in about 35 minutes. Kevin's doctor was there as well as the nurses, PA's that have been part of his team and a couple students. After the process the hospital staff sang happy birthday to Kevin. They do this with all transplant patients because it is the beginning of a new life. From their perspective you now have two birthdays to celebrate every year. Dad, Mom, Stephanie, Chris, of course, Kelly and Beth were there for the day. We got to go home at the end of the day. Kevin is still there for another 4-5 weeks.
According to Kevin's doctor the next two weeks will be the worst for Kevin. It should take 2 - 2 1/2 weeks before we know if he is accepting or rejecting the stem cells. Keep the prayers coming!!!
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03/09/09 to 03/15/09 |
Kevin felt pretty good up until Thursday when he started getting a sore throat. On Friday his numbers bottomed out and he received a transfusion of platelets. He also spiked a fever and developed ulcerative sores in his mouth and throat. The fever was gone by Saturday and has not returned yet. Kevin received another transfusion of platelets on Saturday. He has been living on protein shakes and ice cream so far. Dr Jana told him the sores will not go away until the new stem cells kick in. Because his hair started falling out again, he decided to shave his face and his head. Another antibiotic has been added to his regiment. He has very itchy skin that is becoming a problem so they are trying something new to help alleviate the itching. He has lost 25 lbs in the last two weeks. He just loves getting all the cards and small gifts that people are sending him. He spoke to Carrie on the phone for the first time on Thursday evening. It was good for the two of them.
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03/16/09 to 03/22/09 |
On Monday, the 16th, his numbers started creeping up every so slightly. The mouth and throat sores continue to be a big problem for him. His platelet count has to be up to 1.5 before he is allowed to go home. On Saturday his count is 1.76 and they are talking about him going home on Monday, the 23rd. This would be unbelievable since it will only be plus 17 days since the transplant. Later Saturday Kevin is throwing up and they decide to run some cultures to see if there is a problem somewhere. He won't be going home yet. We pray that this is not a serious setback and that he will be home soon.
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03/23/09 to 03/30/09 |
Kevin finally came home on Wednesday, March 25th (just 19 days after transplant) which is much sooner than they expected. The stem cells are grafting amazingly well and his counts continue to rise but he still will be a "bubble boy" for quite awhile. He goes back to the hospital on Monday, Wednesday and Friday for blood draws and has a large regiment of prescriptions to take as well as give himself a three hour IV drip of magnesium everyday at home but he is willing to do that just so he is at home.
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03/30/09 to 04/05/09 |
Kevin is doing remarkably well. In fact, he only has to go back to the hospital for blood draws on Mondays and Thursdays now. They removed his triple port on Thursday morning since he no longer needs it. He is looking forward to coming over to Mom And Dad's house for Easter dinner and the big egg hunt.
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04/06/09 to 04/12/09 |
Kevin continues to recuperate at home and only leaves the house for his visits on Mondays and Thursdays to the hospital for blood work. He had a bone marrow biopsy on Monday, April 6th (which is NOT his favorite thing to do) and Dr. Sammy did it and Kevin said it was the best ever - (the fifth one in 9 months) if you can even say that about bone marrow biopsies. On Thursday he met with Dr, Jana and she said the results were good - no leukemia cells present. She is very pleased with his progress. The medication he is taking to prevent rejection called Prograft, has a few side effects that needed to be addressed - the most serious of which is high blood pressure so he now has another medication to take to keep this under control. The best part of the week probably was that Kevin, Beth and Carrie went over to Mom and Dad's for Easter dinner and the Egg Hunt. This was Kevin's first venture out of the house.
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04/13/09 to 04/19/09 |
Kevin was told on Monday that all his bone marrow has been replaced by Chris' stem cells and that is good news! He continues to feel very tired and run down but knows his recuperation is a long process. Friday, April 17th, he had an ultrasound done on his abdomen because he has been complaining about pain for quite awhile. Nothing showed up and the doctors did not seem to be too concerned. Kevin was told that starting the week of April 20th he only needs to go to Henry Ford once a week for blood work and tests. He's doing that good!
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04/20/09 to 04/27/09 |
Kevin continues to improve ever so slowly. He is down to one visit per week for blood work. They were concerned last Monday that his blood pressure was too low so they decreased the dosage he is taking. He still does not have any strength and that is frustrating for him to not be able to perform the simplest tasks.
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04/28/09 to 05/03/09 |
Kevin developed tremors over the weekend of the April 24 - 26th which were signs of Prograf toxicity. When he went for his blood work on Monday his doctor told him not to take any that day and that the pharmacist would call him with new dosage directions. Normally they decrease the dosage around the 56th day anyways and his was decreased on the 52nd day. Since the decrease in medication he seems to be doing much better. Beth reports he has been dressed when she gets home from work and now has energy to get on the floor and play blocks with Carrie which he had not done for weeks. Other than that, he continues ever so slowly, towards full recuperation.
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05/04/09 to 05/10/09 |
Kevin continues to work on feeling better. Blood work done last Monday was good. Each day he seems to feel a little bit better. The highlight of the week was that Kevin was able to come out to Mom and Dad's house on Sunday for Mother's Day - we all think it did him good to get our of the house. Still doesn't have much of an appetite and continues to lose weight.
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05/11/09 to 05/17/09 |
Kevin says he feels a little better each day but far from good. We know it will take a lot of time. It was disappointing to hear that he would not be able to come to St. Peter's Golf Outing this year. The doctor said absolutely not - he has the immunity of a 69 day old infant. We will be going to two week updates starting next week.
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05/18/09 to 06/01/09 |
Kevin is starting to feel well enough that he wants to get out and do something but the doctor says "not yet." He still does his Magnesium infusion everyday, but he'd still like to get out. He was bummed that he could not go up north over Memorial Day Weekend so we all went to his house for a barbeque on Monday to cheer him up. Reports from the doctor continue to be good. The rest of the family went into Chicago for the Care for Kevin Benefit on Saturday, May 30th. What a blast! Too bad he couldn't be there to see everyone and all the hard work the committee put into this fundraiser. Words cannot adequately express our gratitude for all that these people have done. The entire Christesen Family is SO thankful!!
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06/02/09 to 06/15/09 |
Kevin has really started feeling good just these past weeks. Blood work continues to be good and the doctors are very happy with his progress. Chris took him down for the latest blood work.
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06/15/09 to 06/29/09 |
Mom took Kevin for his blood work on the 17th. He also had a scheduled bone marrow biopsy because he is 100 days post transplant. They also ran genetics testing and another test on his immune system. The bone marrow biopsy was not the best one even though he requested a certain doctor who had done it last time. The staff was so happy with the results of the blood work that they told Kevin they were decreasing his Prograf and cutting his daily magnesium infusion to half of what he has been taking. They also said Kevin would be coming every two weeks now. The results of the genetics test and immune system would not be ready until next week.
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06/30/09 to 07/13/09 |
Lisa took Kevin in on the 1st of July. All the blood work continues to be very good. His immune system is almost back to normal. The doctor knew from the genetics testing last July that the leukemia was caused by a translocation of the 4th ad 11th chromosomes. The results of the latest genetics testing shows that Kevin's DNA has been completely replaced with Chris' DNA so he has a very good chance of beating this. He was able to spend a few days up at Clif's and at the condo over the Fourth. This was his first adventure out into the real world. The news just keeps getting better and better!
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07/14/09 to 07/27/09 |
Mom took Kevin to the hospital on Tuesday, July 15th. Everyone continues to be very pleased with Kevin's progress. They lowered his Prograf medication again and took him off his daily magnesium drip. He said it's good to get the needle out of his chest and only take the magnesium by mouth. Dr. Jana asked the nurse who the new patient was in room four when she walked down the hall. It was Kevin but she did not recognize him! He now has all his hair back on his head as well as his beard. Kevin now spends his days with Carrie taking bike rides to the park, doing puzzles or playing with her. She is great company! We will be going to every three week reports because starting Tuesday, July 28th, Kevin will be going back to the hospital every three weeks. The one year anniversary of the diagnosis is Tuesday, July 29th. We want to again say 'thank you' for all the prayers people have said for Kevin and for all the support he has been shown throughout this journey.
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07/28/09 to 08/25/09 |
Progress continues to move along well. For the first time in over a year, his blood levels are in the normal range. He still goes in for labwork every two weeks but hopefully after the next appointmant he will be going to every three weeks. Kevin will be celebrating 6 months post transplant on September 6th. This means he will be having another bone marrow biopsy and they will also run tests on his immune system. He has had a busy summer with Carrie and he was also given permission to drive officially these last weeks.He is waiting for the day when they tell him he can eat fresh fruits and vegetables ( all he really wants is to be able to have an onion, lettuce and tomato on a burger) His Prograf was lowered again and now he is on the lowest dose there is which means he may be done with that soon as well as the magnesium. Please keep the prayers coming! Hopefully we will all be saying prayers of thanksgiving very soon.
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08/26/09 to 09/15/09 |
Things are still moving along well. Kevin has had two visits with the doctors since the last update. At his last visit he was told he had too much iron in his blood so has to go back and have some blood removed (that's how they rid the body of excess iron). Kevin had another bone marrow biopsy last week.Unfortunately it took the doctor 3 different tries in 3 different spots before he could get through the bone to get the sample size he needed. Thankfully they now know how difficult it is so Kevin was sedated pretty well. He did need to get some pain medication a couple days later. He feels better and better with each passing week.
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09/16/09 to 10/07/09 |
Kevin has had two doctor visits since the last update. On the first appointment everything was going well and they continued removing blood to dispose of the excess iron. On Tuesday, October 7th which was his 7 month post transplant anniversary, Kevin was told he has a mild case of GVHD or Graft versus host disease. This means there is a bit of rejection going on. It is very common and shows his immune system is kicking in. He has a rash, dry eyes and mouth and is loosing some hair. He received a few prescriptions to treat the condition and hopefully he will be back on track very, very soon. On a side note - Carrie received a first place award for her best animal costume at the neighborhood Halloween party on Saturday, the 10th. She was a skunk again.
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10/08/09 to 11/05/09 |
Kevin has had a lot going on since the last update. Not only is he still showing signs of HVGD, he now has to see a dermatologist to have several moles removed from his body. The combination of the chemo and radiation has caused some of the Christesen moles to grow uncontrollably so they have to be removed. The largest one on his left chest was removed on Monday, October 19th. He had another appointment on Thursday, October 29th at Henry Ford with his oncologist. The stitches were removed on Monday, November 2nd. He had an appointment with the oncologist on Thursday, November 5th and they hope to lower the Prograf dosage and take him off steroids by the next week and hopefully go back to appointments every two weeks.
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11/06/09 to 12/09/09 |
Kevin continues his journey. The doctors are now planning on weaning him off of the steroids he was been on for the GVHD and lowering the Prograf again. He has been getting very bad headaches so the doctors plan on pursuing that problem over the next few weeks. They think it may have something to do with the chemo injections given directly into the spine that he received three different times He was able to spend Thanksgiving with the family at mom and dad's and looking forward to Christmas at mom and dad's.
Our family would like to thank all of you who are following Kevin's journey for the continued prayers and support and wish all of you a blessed and Merry Christmas.
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12/09/09 to 01/31/10 |
The Christesen family had a wonderful Christmas together and a great time celebrating both Carrie's fifth and Kevin's 30th birthday in January. Kevin continues his visits to the doctors every two weeks. He is on a very low dose of both steroids and Prograf with the intention he will be off both of them soon. He is very anxious to see what happens on his one year anniversary because everytime he asks his doctors about when he can do something or when he can have something their answer is always "let's just make it to a year!" His one year anniversary is just around the corner - March 6th
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02/01/2010 to 03/06/2010 |
Kevin finally made it to visits every four weeks since his last appointment on Wednesday, February 18th. He will be having another bone marrow biopsy within the month as well as getting all his immunizations again (since he is not immune to any childhood illnesses anymore)
The best part of this report was that our family and friends had a surprise first birthday party for him on Saturday, March 6th - his one year anniversary date of the stem cell transplant. We had plenty of food and drinks and a lot to celebrate !! This is a milestone in his recovery. Keep the prayers and good thoughts coming. We love you all!!!
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03/07/10 to 05/11/10 |
The side effects of the GVHD (graft versus host disease) continue to be very bothersome to Kevin. The worst part at the moment is the joint and bone pain. Many mornings he can hardly walk. A physical therapist is coming to his house every week to see if that will help. He still had a very itchy rash all over his body and dry eyes and mouth. These are all very common side effects with GVHD. He is back to going to the doctor's every two weeks because the new immuno suppressant drug they started him on can affect his blood counts which have been very good so far. The last bone marrow biopsy was excellent. He continues to try to live each day with a positive outlook but he's hard many days. We celebrated Mackenzie's 13th birthday and Ryan's 17th birthday as well as Mother's day on Sunday, May 9th and Kevin was able to make it there.
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