August 24Four $1000 scholarships in Rebecca's name will be awarded to Nursing Students at USC. There will be a ceremony on September 9, at 4 pm, School of Nursing, Faculty and Staff Lounge.
February 14
She Lost Her Ponytail
Before she lost her hair, she lost her ponytail. Her ponytail, she insisted, go to someone else in need.
Before she lost her eyebrows and eyelashes, she lost her ponytail. Her ponytail exposed the long eyelashes and delicate brows defining her beautiful green eyes.
Before she lost her energy, she lost her ponytail. Her ponytail flew in the breeze when she could run with carefree abandon.
Before she lost her freedom, she lost her ponytail. Her ponytail has swung with a jauntiness belonging to a child of independence.
Before she endured pain and suffering, she lost her ponytail. Her ponytail had moved in harmony with the many phases of her moods.
Before she fought for her life, she lost her ponytail. Her ponytail had always been there to braid, to curl, to pull out, to put up or to straighten. And she thought to frame her character and beauty.
Before she lost her battle, she lost her ponytail. Her ponytail was always greatly missed, but without it, she found she had great courage, faith, humor and love. And was beloved by many for being, inside and out, a person of great beauty …
For my Becca
February 2008
With all my love, Mom
January 23
We have now set the time and place for services. A memorial service will be held at 11 am on Monday, January 28 at:
Saint Peter's Catholic Church
1529 Assembly Street
Columbia, SC 29203.
There will also be a visitation with the family from 5 - 7 pm on Sunday January 27. The visitation will be held at:
Caughman-Harmon Funeral Home
5400 Bush River Rd
Columbia, SC 29212
January 22 More
Thank you for the messages sent today. I have not yet been able to reply to most, but we do appreciate your thoughts and prayers.
Arrangements are still not complete.
Today we did spend several hours at the funeral home (Tim's employer will handle funeral arrangements) and the priest who will officiate (Father Tim of the St. Thomas More Center on the USC Campus). After some thought, it appears to us that both the funeral home chapel and the Chapel at St. Thomas More may be too small, so Father Tim will inquire about having services at St. Peter's Church downtown. We expect to have a memorial service conducted by father Tim, rather than a full Catholic funeral involving a funeral Mass. We are opting for cremation, so there will be no separate burial service.
Sunday and Monday (1/27 and 1/28) are being considered. Catholic funerals are not normally held on Sundays, although a memorial service without a Mass might be ok depending on the availability of the Church. We were too late meeting with Father Tim to get this settled today, but I think we should know by tomorrow (Wednesday) morning. I'll get the information out about this as soon as I can tomorrow, along with some hotel information.
I believe that Kathy's sister Margy and Rebecca's friend Stacey will speak during the service. If any of you would like to send a brief description of happy or meaningful memories you have of Rebecca, I will pass these along to Margy or Stacey, and I may also post them on the web page I have been maintaining for Becca.
Of course the house is a mess, but we hope that everyone will feel free to visit us while you are here.
I will update you with more information by e-mail soon, and will also post to this page:
http://www.homeworkhero.com/cgi-bin/aahero02/acceptit20/display.cgi?becca+try_try01
(or just Google "Becca Chappell Page").
Also, for family members, please let us know if you are coming. I believe that there may be some reserved seating, so a rough head count would be helpful.
January 22
Rebecca passed away at about 5 am this morning. Kathy, Tim, and I, and also Becca's friend Stacey and Kathy's sister Beth were with her at the time. It had been a difficult night for her, but was peaceful at the very end. We will try to rest this morning, but I will provide information on services when that is possible.
January 21 (More)
One of Rebecca's doctors came by this afternoon and examined her. He is less inclined to think that the horizon is necessarily as short as 24 to 48 hours, as I suggested in my last posting. So things are not good, but my last posting may have been misleading.
January 21
Becca's condition has deteriorated rapidly. She is is not in pain and is resting comfortably, but her heart rate has increased and her temperature has increased a bit. The hospice nurse who saw her this morning believes that she may have as little as 24 to 48 hours left. I will of course be updating this page with further information.
January 17
Monday we made it in to the clinic for platelets. Tuesday night Becca's pain got out of control again, but we got doses adjusted upward more quickly this time. By Wednesday morning she was sleeping comfortably. Tim and I moved her Temperpedic mattress and her TV from her apartment to the den at our house, so she now has fairly comfortable bedding and entertainment upstairs and down at home.
January 13
Becca accidentally pulled out the needle accessing her port yesterday, cutting off her IV meds that have been controlling her pain. After several hours, three failed needle sticks, and help from three nurses in our home, all is well. One of the nurses from the clinic left her own small children with a neighbor, drove 30 miles each way to and from her home to ours on her day off (getting no pay), and successfully accessed the port. We are so thankful for Robin and the other extraordinary people who have been helping us.
Fortunately, today things were much calmer.
January 12
Becca continues to be fairly comfortable and is sleeping or resting for fairly long stretches. When she is awake, she tends to be a little groggy and sometimes a little confused, but at other times very aware. She has been eating a little better (with middle-of-the-night blackberry cobbler and ice cream two nights in a row) and also walking around a bit.
January 9
At the clinic on Monday, the doctors were able to medicate Becca so that the pain was more bearable, but by late Monday night it was again out of control. We had a dilaudid drip running at home and consistently increased the dosage through the day on Tuesday with no apparent effectiveness. Early Tuesday evening we considered getting an ambulance to take her to the hospital, but the doctors tried a combination of toradol and Ativan, along with the dilaudid, which finally provided some relief. Kathy and Rebecca were able to sleep for the first time in several days, and Rebecca is now much more comfortable. We are also now being helped with the delivery of medications by home health nurses.
January 7
Becca has remained out of the hospital, but has made several trips to the clinic for blood or platelets. Since Friday, she has had severe pain, and she has been at home with us rather than in her apartment. Overall, her condition seems to have declined rapidly over the weekend. She is scheduled to be in the clinic today, perhaps for blood and platelets and also to see what can be done to control the pain.
Dec. 27
Becca continued her Christmas rally despite the continuing discomforts and we were all able to enjoy the day. Yesterday it was back to the clinic for blood and platelets; today we will go to lunch with Burns Harris (her high school tennis coach); tomorrow back to the clinic for blood.
Dec. 24
Becca is home with us for Christmas. She has felt better for a couple of days and is now out doing some shopping.
Dec. 21
Rebecca has been at home in her apartment. She had friends over for a few days, which was good. She has continued to have severe pain, which limits what she can do. Yesterday was a miserable day at the clinic. She spent most of the day getting platelets, and the needle stick in the new port was very uncomfortable.
Dec. 17
Becca was discharged late last night. She has been without fever for a few days, and has not had severe attacks of nerve pain for about 24 hours, so things are better.
Dec. 14
The surgery to install the port went fine. Becca is still in the hospital. She has had pain from the surgery site and from shingles, as well as bone pain, and she has also occasionally run fevers. But we are hoping that she will be discharged Saturday.
Dec. 11
None of the tests have been positive for staph, which is good. Also the shot site is looking better. She received Mylotarg last night, is rescheduled for the surgery to insert the port for tomorrow (Wednesday) and hopefully will come home by Thursday.
Dec 9
Becca is back in the hospital. She got a shot in the clinic on Thursday, but it appears that the shot site has become infected. The doctors suspect staph, and perhaps MRSA, at least they are treating it that way (implying that we have been barred from common areas of the ward like the coffee maker and refrigerator as a quaranteen measure). Rebecca is running a fever, itching from the shingles, suffering bone pain and pain in the shot site, so she feeling awful. And the procedure to insert the port has again been postponed, so that she has to have medications by IV instead of the port. Inserting IVs is becoming more difficult also, since the good sites have been used and she doesn't heal quickly.
December 7
Rebecca was supposed to have a port inserted yesterday (to replace the Broviac), but she had a mild fever and the procedure was postponed. We now expect that to be scheduled for Monday. She has still had considerable bone pain in her legs, and is taking methadone and morphine when needed.
December 2 (More)
I have perhaps not been completely clear about Rebecca's overall situation. The doctors no longer believe that she has a realistic chance for a cure. A stem cell transplant is not an option unless she is in remission or close to remission, and the last rounds of chemo did not move her towards remission. The Mylotarg may hold the disease off for a while, and that is now what the treatment aims at.
December 2
The surgery went fine and the Broviac has been out several days. The wound has been slow-healing, however, and hip and knee pain has been severe (but the pain through the rib cage has subsided). Until last night, Becca briefly spiked fevers, keeping her in the hospital. Last night she did not, so she could be discharged Monday.
November 27
The doctors have confirmed that Becca's Broviac catheter is infected with staph, and they have decided to remove it. They will then treat her with antibiotics for a while before putting in a new catheter. She will have the surgery to remove the Broviac today. The removal is a minor procedure, but she will be under general anesthesia. After removal she will have the benefit of being able to have a real shower, but she will be subject to lots of needles until the new one is put back in.
November 26
Becca was discharged on 11/18 as planned, returned to the clinic for blood and platelets on 11/21, and we left for Virginia for the Thanksgiving holiday on 11/22. We arrived in Virginia Beach at the Dietz home shortly before dinner. Rebecca had an uncomfortable trip and felt too sick to eat. On Friday, we had planned to go to Williamsburg for a Chappell family visit, But Becca woke up with a rash and petechiae (red dots indicative of low platelets), so we went to the King's Daughters hospital emergency room (the Columbia doctors had been in touch with those at King's Daughters before the trip). She got platelets, and the rash turned out to be a recurrence of shingles. She briefly ran a fever and the doctors wanted to admit her and perhaps fly her back to Columbia by medical transport, but Rebecca decided against this. We drove to Columbia on Saturday, and she was admitted to the hospital when we got back. Tests in Virginia Beach had indicated that she had a staph infection in her Broviac line, but this did not show up in the first test back in Columbia. However, she did run a fever up to 102 in the hospital yesterday, so it looks like she probably does have an infection after all.
November 17
Becca is in the hospital today to start the Mylotarg medication. This drug is likely to produce flu-like symptoms for a day or two, but she could be discharged as early as tomorrow. Becca has had severe pain stretching from the mid back around the rib cage for the last 3 days. The doctors are not sure if this is muscle pain or bone/nerve pain, but she has so far not been able to get comfortable. Despite this, we all (Becca, Kathy, me, Tim, Chrissy) went to the RAIN (a Beatles tribute band) concert here last night. Putting mind over body, Becca was able to enjoy the concert.
November 13 (More)
Rebecca's labs following the last round of chemo still show the presence of a high proportion of abnormal cells, so it appears that this did not work. She will start another new drug, Mylotarg, beginning next week. This drug has shown some effectiveness at slowing AML progression, but is not seen as medication that leads to a cure.
November 13
Becca was discharged last night. She had not run a fever, and the infections were improved. She will still be on antibiotics for a while.
November 9
Rebecca is going back into the hospital with an infection today. She has a fever, a swollen lymph node, and some inflammation around the site of the Broviac catheter. On the positive side, her white blood cell count had moved up some yesterday. If that continues, she will be able to get her next bone marrow biopsy sooner.
November 3
The new photo displayed is of Rebecca last week with her dog, Penny Lane (a Chihuahua). It's hard to believe someone can look this good while being sick. More labs, blood, and platelets on Monday and Thursday this last week. Today Becca's hair is falling out again. We're hoping that this is an indication that the chemo is working. The doctors are still waiting for Becca's white blood cell count to recover from the chemo before scheduling another marrow biopsy to see if she is moving toward remission.
October 28
Rebecca got labs and more blood on Thursday. We are still waiting to hear how the latest chemo is working. In the meantime, she is feeling pretty well. I am posting (above) a photo taken in the clinic on Thursday.
October 24
Sorry for my reporting lapse. Rebecca did finish chemo and got out of the hospital on Sunday (10/21). She was back in the clinic for labs, 2 units of platelets and a unit of blood yesterday. It took all day to do this, because the platelets were not immediately available. It is likely to be a few more days before we have much indication about the effects of the chemo. The last round of chemo was tough, especially at the beginning, with lots of nausea problems. But she felt better by the time she was discharged.
October 15
So long as all of the drugs arrive on time, Becca will begin a 5-day regime of chemotherapy beginning tomorrow. The drugs are clofarabine, cyclophospamide, and etoposide.
October 12
Rebecca's marrow biopsy results were not good; she is not in remission. The doctors are recommending a new chemotherapy drug, clofarabine, to be used in conjunction with some drugs that she has had before in a next round of chemo. She will go to the clinic Monday and we will get details on the planned treatment. The plans for going to Duke are on hold until she makes some progress towards remission. Although clofarabine is an approved treatment for ALL, it is considered experimental for AML, and is not rouutinely covered by insurance. However, Blue Cross approved Rebecca's treatment in about 10 minutes. As a result, I will do my best to never complain about Blue Cross again.
October 7
Becca did get out of the hospital on 10/3. She has been feeling fairly good, and her counts also started to move up. The next bone marrow biopsy should be this coming Thursday. We have been expecting that she would have at least two rounds of chemo before going to Duke, but we may be more clear about the plan once the biopsy results are in.
October 3
The infections have been clearing up, and Rebecca may be discharged today. She will probably have to continue to have Vancomycin at home via IV. She will probably have a bone marrow biopsy soon to get a better idea of how leukemia has responed to the latest round of chemo.
September 27
Becca was admitted to the hospital today with a recurrence of what is most likely a staph infection. Although the spot on her face cleared up, she now has spots of inflection at a variety of places on her legs, especially one ankle and a knee. Nausea is also setting in. This could be a delayed consequence of chemo, or a result of getting four antibiotics for the staph.
September 19
Rebecca is out of the hospital and back in her apartment. The infection has looked much better for a couple of days, and she has not had a fever. She had a long wait for platelets yesterday before checking out of the hospital, as the Red Cross had run short. As we have learned, a post-chemo fever is likely to get her back in the hospital shortly. We expect at least another round of chemo before she might be ready for transplant.
September 13
Rebecca is running a fever, and she still has the infection on her cheek. The doctors suspect that this is a staph infection, and she is getting vancomycin and zyvox. Her round of chemo should end Saturday, but she will likely be in the hospital longer because of the infection.
September 11
We spent the weekend at the beach, but by Sunday Rebecca had developed what appears to be an infection on her face. We came back Sunday afternoon and she was admitted to the hospital. She had been scheduled to get her Broviac catheter (for administering chemo) put back in on Monday anyway. She got blood and platelets, started Vancmycin, and yesterday (Monday) had the surgery to put in the Broviac. She also had a lumbar puncture for a biopsy and chemo, and will begin a 5-day regime of chemo today. If all goes well, she is likely to have at least two rounds of chemo here before everything would be in place for a transplant.
September 5
The bone marrow biopsy from yesterday confirms that the leukemia has recurred. This means that Rebecca will need chemo here before any transplant.
September 4
More information on bone marrow donations:
There is a fee associated with the testing if you order the kit through marrow.org. However, fees are often waived when you register in person at a local drive. If you go to the link below, pick your state, and then look under upcoming drives, you may be able to avoid the fee
Donate Marrow
Local Red Cross centers will also have information on registration drives. In the Columbia area the next drive is Sept. 10 (information below)
National Marrow Donor Program at Greater Southeast Area
Telephone Numbers:
(704) 921-3570
(888) 298-6375
Drive Name: Midland Techincal College
Address:
1260 Lexington Drive
West Columbia , SC 29170
Drive Date: Sep 10 2007
Drive Time: 10:00AM - 3:00PM
September 2
Rebecca's blood counts have not recovered as had been hoped, and the doctors have become convinced that either the leukemia is beginning to recur, or she has a condition called myelodysplactic syndrome, which eventually becomes leukemia. Her latest bone marrow biopsy also showed the presence of a chromosomal abnormality. The particular abnormality, "T(2;8)", is apparently not typical of AML, so little is known about what it implies. However, the doctors say that this also leads them to be more certain that the low blood counts are not just a consequence of a slower than normal recovery. It's also not clear if this abnormality was present from the start (but not detected), or whether it developed as a consequence of the disease or the treatment.
Either leukemia or myelodysplactic syndrome is treated with a stem cell transplant; usually a bone marrow transplant. The pre-transplant treatment differs for the two cases, so the doctors are now trying to figure out which is the case. She will have another bone marrow biopsy on Tuesday to see if there are any changes from the last one.
Assuming that she does get a transplant, that is not something done in Columbia. She will most likely go to Duke (although Charleston is also possible). Rebecca and Kathy would have to stay there for course of the treatment, which could be several months.
We have always known that chances of relapse were fairly high, and that a transplant would be the next phase of treatment if that were the case, but this will be difficult to face.
We still encourage you to be tested and listed in the National Bone Marrow Registry (http://www.marrow.org/). Kathy, Tim, and I are not matches.
August 19
Rebecca has made it past another checkup, but not without giving us a scare. Her white blood cell counts were low, and the doctors were concerned that she might have relapsed. They scheduled a bone marrow biopsy which she had this morning, and that definitively showed that she is still in remission. The blood counts may be a response to fighting off the shingles. So far she is not having severe symptoms from that, which is good. Also, the troubles with her apartment were quickly cleared up. So all continues to look good here.
August 2
Becca developed a rash and has been diagnosed with shingles. This is not unusual given the suppression of her immune system. This does not have any implications about her recovery from the leukemia. On other matters, her move to her new apartment has not gone smoothly. Within 12 hours of move-in, water was leaking from sink, air-conditioner, and refrigerator, and as soon as she plugged in her toaster she knocked out the cable TV.
July 24
Becca's check-up last week was fine. Her blood counts still have a ways to go to be completely back to normal levels, but this is expected at this point after chemo. She is now in shopping mode for her apartment. She and Stacey will move into a downtown apartment on August 1 instead of living in the dorms.
July 16
Becca's photo is here on the Columbia Tennis League page:
Columbia Tennis League
July 3
All is still well. Becca won a $1000 scholarship from the Columbia tennis league, which will be a help for the fall. She also got a new dog, a Chihuahua, named Penny Lane, which she will keep with her in her apartment when school starts.
June 25
Becca's final bone marrow biopsy looked good (she is in remission); her Broviac catheter was removed this morning, and she has no more scheduled treatment. She will have monthly appointments to have her blood checked for some time, but nothing other than that. She heads for the beach to spend a few days with her friends on Wednesday.
June 13
Becca had her (hopefully last) bone marrow biopsy this morning. The preliminary results looked good, but more complete results will follow tomorrow, and even later (perhaps taking a week or little longer for all of them). If all is clear, she will then be able to have the Broviac catheter removed. In the last week she has been feeling better, counts have improved, and her hair continues to grow back.
June 5
The CTScan yesterday was negative, so it looks like the lungs have completely cleared. She can stop one of the anti-fungal medications; she also is stopping the neupogen (which stimulates white blood cell production).
June 2
Becca made the trip to Atlanta and 6 Flags and is now back. She was tired and sore after a day at the Park, but she is feeling better and is now out at the movies with friends. She is starting to grow a little bit of hair back (but so far just starting). She will be in the clinic on Monday, so we may get an idea of what her schedule will be like in the near future. She is finished with treatments, but will need to bet the Broviac catheter removed and will have frequent doctors' appointments for a while.
May 28
Becca has been making up on lost sleep since geting out of the hospital. Her counts were up a little more this morning, so the doctors gave her an ok to go on a trip for teens with Cancer leaving tomorrow. They will go to Atlanta, visit 6 Flags, stay in a 5 star hotel, and have a few other activities. I'm not sure that she's really feeling up to an amusement park, but she wants to give it a try.
May 26 Second Update
Becca has been discharged and her counts were up a little more this morning.
May 26
As of last night Becca had been without fever for 2 days, and pending blood counts this morning, could be discharged today. The white blood cell counts were still very low yesterday, but were up a little from the day before.
May 21
Becca has developed a cough, but it doesn't seem to be severe and a chest X-ray was negative. She has still had some fever occasionally, and her white blood cell counts are very low. She got blood yesterday and platelets today. The doctors want to keep her in the hospital until the counts start to rise at least a bit.
May 18
The infection in the Broviac line seems to have cleared up, but Becca still has a fever and severe joint pain. The fever could have another source, so she is now getting a second antifungal medication as a preventative. She is getting morphine for the joint pain and this is keeping her groggy most of the time.
May 14
Becca has a strep infection in the line of her Broviac catheter. This is apparently the cause of the latest fever. The Broviac is the tube inserted in her chest where all intravenous medicines go in and blood for tests come out. There may have been some human error involved with this infection. When she was in the hospital getting the last round of chemo, one of the caps the Broviac line "disappeared" leaving the line open for about 8 hours. The cap was probably removed along with a medication being administered. She is getting antibiotics for the strep, which will probably clear this up in a few days.
May 13
Rebecca broke the fever limit late last night, so we once again made the middle of the night trip to the hospital. She has been admitted and will probably have to stay until the fever is down for 48 consecutive hours. She also had some severe hip pain, probably from neupogen, last night. In that regard, the hospital does offer one benefit compared to home -- morphine!
May 11
Becca needed a couple of units of blood yesterday, and counts were low, but this is normal for post-chemo. She is feeling a little better today.
May 10
Becca's eyes have still been irritated, but were a little better yesterday. She has been nauseous and a little light-headed -- she predicts she will need a transfusion at the clinic today (she has a regular appointment). But on the whole things seem to be going well.
May 5
Becca was discharged on schedule. She had some minor trouble with eye drops on this visit. One of the chemo drugs dries up the eyes, so she always has to take eye drops with it. This time the usual eye drops caused her eyes to get irritated, and so a second eye drop was needed to get rid of the irritation. She is not feeling especially well, but we are hoping that this will be the last stay in the hospital.
May 3
Rebecca was admitted for the last 2 days of chemo today; should be back out on Saturday.
April 28
Oops. Missed a few days and events. Rebecca was admitted on Thursday (4/26) and was discharged today (4/28). This round of chemo involves 2 days in, 5 days out, and then 2 days in again. So she will be going back in on Thursday. All has gone well so far.
April 23
Becca's blood counts were slightly below the required level to start the last round of chemo today. However, the trend is up. She will have labs again on Thursday 4/26, and if the counts are up a little bit more, she will start chemo then. At that point the schedule will be 2 days in the hospital for chemo, 5 days out (assuming all is well), and then 2 days in for chemo.
April 18
Rebecca is still at home and doing well, and expects to be admitted for the final round of chemo beginning Monday, April 23.
April 14
Becca has been feeling well. Last night she went to the relay for life fundraiser at USC and had a good time. The students put on a fundraiser, but also have events and entertainment outside through much of the night. Becca didn't make it an all-niter, but had fun until after midnight. She may go apartment hunting today in preparation for the fall semester. She plans to change her major to nursing--she has seen a lot of nursing first hand, and the nurses she has had have been extraordinary people. Only one round of chemo to go now, perhaps starting within a week. She will be in the clinic Monday and also get a CTScan. If blood counts are good and the scan shows no traces of pneumonia, she will likely start that last round later in the week.
April 8
Becca was discharged today. She is tired, but is still recovering nicely from the pneumonia.
April 6
The fever has been below 101 for 24 hours, and the white blood cell count is up a little more. If the count continues to improve and a CTScan for tomorrow shows improvement with the pneumonia, a Sunday discharge is possible.
April 4
Becca has felt a little better, and the cough also seems to be disappearing, but she has still had a fever. She hasn't had much of an appetite, since everything tastes like cardboard, but the doctors want her to eat -- so she managed to get her calories in a milkshake and fries from Hardees.
April 2 Afternoon
The CTScan shows pneumonia, but it isn't possible to tell the nature of the infection (viral, bacterial, fungal). More medications (azythromycin, cancidas) are being added to cover all possibilities.
April 2 Morning
The fever has persisted and the cough has developed into a mild sore throat. The cough is also making sleep difficult, so Rebecca is tired on top of feeling badly. The blood counts have remained low, so she got transfusions of whole blood yesterday. She will also get platelets today. The chest x-ray from a couple of days back was negative, but she will get a CTScan today to follow that up today.
March 31
Yesterday Becca's temperature crossed the 101 limit and she has also developed a cough, so she is back in the hospital. She was put on vancomycin and zyvox (I believe). She had a reaction to the vancomycin. This was apparently the famous (or not so famous) red man syndrome; i.e. red skin around the face and neck. She was given some benadryl for this. She also got a chest x-ray, but I have not heard the results. Her white blood cell counts had gotten very low, so we were not too surprised that she is back in the hospital. Despite this, she is not feeling too badly.
March 26
Becca has still been feeling well, but was tired yesterday. Before that she had been out and about with friends a few times. The doctors had predicted that her counts would fall after the chemo, and that was confirmed when she went to the clinic today. She needed platelets and two units of blood, and will go in for another unit of blood tomorrow. Her temperature has edged up a little also, but has stayed under the 101 mark that puts her back in the hospital.
March 20
Becca was released this morning after completing the fourth round, and she is feeling remarkably well. She and Kathy went out shopping in the afternoon.
March 17
As you can see from the photo above, I have gotten my haircut, and have accordingly become the second-best-looking bald person in the household. Thanks again for all the support. By the way, you can still contribute by clicking the St. Baldrick's link above.
Becca is not feeling great but is getting by with usual side effects in her fourth day of this chemo cycle.
March 15
Thanks to those who have donated to St. Baldrick's (link above). Your generosity surpassed my original goal in a single day! Everyone else: You can still join in. (I guess this means I'll really have to go through with the haircut).
Only 1 day into this round, but side effects (nausea) have begun. Good news: I misinterpreted the protocol; two of the chemo drugs will be partly overlapping, so this course will be six days rather than nine.
March 14
I have decided to enter The St. Baldrick's Day head-shaving event in Columbia this Saturday to show support for kids with cancer and to raise funds for cancer research. To make a donation to the St. Baldrick's Foundation (a very worthy organization) go to:
St. Baldrick's
Becca was admitted to the hospital this morning and the preliminary bone marrow biopsy looked good. She also had the spinal tap chemo and will begin a nine-day course of chemo this afternoon.
Also, the University of South Carolina has relented and restored her scholarship eligibility.
March 12
Becca has felt much better for the last three days. She has been out with friends several times, and went to see a movie (the 300) with Kathy and me this afternoon. She was in the clinic for blood work this morning and the results were good. The white blood cells were up, even though she has been off of the neupogen for a while. All the good results mean that she will be back in the hospital on Wednesday for a lumbar puncture (spinal tap), bone marrow biopsy, and then admission for the fourth round of chemo (8 or 9 days this time).
As an aside, the University of South Carolina has informed me that she has permanently lost one of her scholarships because she/I failed to fill out a required form when she withdrew (I spoke to at least a dozen people getting her out of school, but apparently that was not enough). It will probably get fixed eventually, but it has me annoyed today.
March 9
Yesterday, Rebecca woke up feeling unsteady on her feet. She was scheduled for a clinic appointment anyway, but her difficulty walking earned her a drug test followed by an MRI to rule out a brain infection. Fortunately all tests were negative, and it turns out that this was most likely a side effect of Levoquin (an antibiotic) or perhaps Vfend (an antifungal). By afternoon, she seemed back to normal in any case, and she felt well enough to visit a friend last night. She has now finished the course of antibiotics for the last infection, so hopefully the side effect will not recur.
March 2
The fever stayed down, and Rebecca is home again. She is tired, but hoping to get a good night's rest. By my count, she has been in the hospital for a total of 66 days since Nov. 7.
March 1
As of this morning, Rebecca's fever has been down to an acceptable level for about 30 hours. If this continues, she could be released tomorrow.
Feb. 28
Becca looked better yesterday. In particular, the visible skin infections had gotten much smaller, so the antibiotics seem to be doing the job. They had switched drugs again Tuesday night at the suggestion of a specialist on infectious diseases. Her white blood cell count was up notably, so that should also help. The fever has not yet disappeared, however, so she may be in the hospital a while longer.
Feb. 25
The fever reached 104 today, and apparently she has an infection that is showing up as welts on the skin in several places: below an ear, on top of her head, on the hand and arm. She has been on antibiotics (vancomycin) since arriving, but is on a new one (linezolid, a.k.a Zyvox) tonight.
Feb. 22
Rebecca had been feeling a little better, but she developed a low fever in the last few days. Her temperature briefly reached 101 last night, which is the critical number to get her to the hospital. She was back in the hospital (and not happy about it) early this morning. Her temperature is now lower, and if it stays lower, she could be out by Saturday morning. Tim and I have had colds, so Rebecca and Kathy are going it alone so far in the hospital.
Feb. 16
Becca was discharged late on the 14th. Since then she has generally not felt well, and has stayed in bed most of the time. This is mainly nausea, headache, and fatigue. Her last CTScan showed a little fluid in the lungs, but generally, the indications are that she is suffering normal, but unpleasant, chemo side effects. Although this last round lasted only 5 days, the doses of the drugs were larger, so the side effects are likely to be worse.
Feb. 12
Nausea, headache, backache, hip pain, low fever. Not an easy day. The back pain has also moved around to the chest, but an chest x-ray was negative.
Feb. 10
Good news on the bone marrow biopsy. The doctor reports that her bone marrow looks normal (1% abnormal blast cells, but 1% abnormal is normal). He says this is a "thing of beauty." The chemo is causing nausea, the lumbar puncture is causing some back pain, and the hip pain persists, but it looks like there are good results.
Feb. 9
Rebecca came into the hospital this morning for a bone marrow biopsy and chemo by lumbar puncture. The preliminary result from the marrow biopsy looked good, so she has been admitted to the hospital for the next round of chemo. This is scheduled for 5 days.
Feb. 5
After being off of the neupogen for a few days, Becca's white blood cell count has declined to 1.3. The doctors have decided to wait at least a few more days before starting chemo again.
Feb. 1
Counts were up again at the clinic today; even platelets were up. The doctors have decided to take her off of the neupogen (which stimulates the bone marrow) and may have her back in for the next round of chemo next week (with the timing possibly depending on a bed being available). This is on schedule given the protocol, but a bit earlier than we had expected. She will leave for a trip to the Isle of Palms (near Charleston) tomorrow afternoon and return Sunday.
Jan. 29
White blood cell counts have soared to 5.1 (this is now at the bottom end of a normal range). Hemoglobin is also up and she did not need platelets today. She had previously been using platelets at a rate of 2 units every 3 days.
Becca plans to go on a trip to the Isle of Palms with sponsored by the Cancer center this weekend. After getting back, it should not be long before the third round of chemo starts.
Jan. 25
Becca was in the clinic today for labs and also received two units of platelets. The lab work showed a much higher white blood cell count (2.1, compared to only .3 a few days ago). The stubbornly low white blood cell count has been a concern, so this is good news. She can also get out and about more, since she will be less susceptible to infection.
Jan. 22
Becca was in the clinic today as an outpatient. Her platelets were very low, so she received two units. Her white blood cell counts are also very low, so a fever of 100 or higher will get her back in the hospital. Apart from severe hip pain (most likely a side-effect of neupogen) she is feeling ok, much better than after the first round of chemo so far.
Jan. 20
Afternoon Update: Becca will be discharged this afternoon.
Becca's fever rose overnight and then fell again yesterday, but this has kept her in the hospital at least another day.
Jan. 18
Rebecca has now gone about 48 hours without a fever, and unless it reappears tonight, she is likely to be back at home tomorrow. She is getting blood tonight, and will likely get platelets tomorrow before coming home.
Jan. 15
Back to the hospital this evening. Becca has a mild fever and some sores in her mouth. The fevers normally will require hospitalization.
Jan. 12
Becca came home yesterday, felt good, and got out to visit some friends. She is permitted out, so long as she avoids crowds. She had not slept well for a few days, and is catching up on sleep this morning.
Jan. 10
Becca will have her last dose of chemo this morning and as long as she has no fever will be discharged. The next round begins around Feb. 1.
There are no family matches for a bone marrow transplant. Tim had been a 1 in 4 chance; Kathy and I were 1 in 100; more distant relatives were 1 in 10,000. Doctors would seek an unrelated donor from a worldwide database only if she fails to be in remission after the chemo regimes are completed or if she goes into remission and later relapses. According to the protocol she will now have three more "intensification" rounds of chemo, each cycle lasting about a month, with the treatment phase in each round going from 5-9 days.
Jan. 8 More ...
Seem to have found the proper drugs for relief today. Adavan for nausea and Imetrex for the headache. Becca is feeling much better tonight as we watch Florida vs. Ohio State.
Jan. 8
Nausea and a severe headache arrived last night and are persisting today. She is getting two units of blood; this might help with the headache.
Jan. 7
So far, so good with the second round of chemo. Apart from being a little nauseous this morning, Becca has generally been feeling well and has been up and around and occasionally outside for walks.
Jan. 4
Becca was readmitted to the hospital yesterday, as planned. After a week at home, she needed platelets and two units of blood. She then had a lumbar puncture (spinal tap) and an injection of chemo into the spinal canal. This is a normal procedure beginning a round of chemo. She started her regular course of chemo last night. This round should last 8 days and she will probably stay in the hospital at least a few days after it is completed.
Jan. 1
Not much change. The plan is to go back to the hospital on Wednesday.
Dec. 28
Good News! The bone marrow biopsy showed that the percentage of abnormal cells is down to 5%, within the range desired after a round of chemo. The doctors told her she can wait until after New Year's day to return to the hospital for more chemo.
Dec. 27
Becca has been feeling better and able to eat more normally in the last few days. She was in for a bone marrow biopsy today on an out-patient basis and also received platelets. The lab report had not come back before we went home, but it now appears that she will probably stay at home until Friday or even Monday before going back into the hospital for more chemo. We should know more about this once the lab reports are back tomorrow.
Dec. 23
Becca is at home, coming yesterday (Friday), a day earlier than we had originally expected. Her fever has been gone for about a week and she has eaten small amounts of food without getting sick. Kathy and I are trying to keep track of and adminster medications and nutrition, both pills and IVs.
Dec. 20
As it turns out Rebecca might be out of the hospital from Saturday thru Christmas. Her temperature has been normal for a while and if all else is stable, they would like to let her get a few days at home, then come back to start chemo Tuesday.
Dec. 18
The doctors discussed their plans with us today. The difficulties are that the white blood cell counts are still low and the lung infection remains a concern (although the CTScan today showed much improvement). There is normally reluctance to start a second round of chemo with very low blood counts, and the possible presence of the fungal infection makes this more dangerous since the chemo normally lowers counts further. This would put her at greater risk from the infection. On the other hand, the latest bone marrow biopsy still shows a need to aggressively treat the leukemia. The doctor feels that a few more days of patience are called for. She wants to give Becca more time to strengthen and fight off the infection, but then plans to resume chemo in about a week, even if the blood counts are not up to the optimal levels. Looks as if we will have Christmas in the hospital, but that's ok.
Dec. 16
Becca has been feeling better. She has eaten a tiny bit of solid food in the last 3 days, has not run a fever for 2 days, and the tonsilitis and sinus congestion have cleared up. She was able to get off the IVs and walk around outside for a little while this afternoon. The white blood cell count is still low, but the doctors say that feeling better is sometimes a precursor to an upturn in the counts. She should have another CT Scan on Monday to see what is happening with the fungal infection.
Dec. 14
Complete results from the bone marrow biopsy were not entirely good or bad. The percentage of abnormal blood cells is down to 12% from 27% (at the date that she was diagnosed), but the target is 5% or less to be in remission.
Dec. 12
Becca had another bone marrow biopsy today with encouraging preliminary results (complete results will take 24 hours). There are indications that the chemotherapy and neupogen (to stimulate the marrow are working). The lung infection is still a concern.
Dec. 11
Yesterday's CTScan showed evidence of a fungal inflection in the lungs. A new medication has been prescribed for this. Also, although the white blood cell count has been rising, the rate of increase has not been as high as the doctors would like to see.
Dec. 9
Blood counts have again improved somewhat, however the hip pain is persistent and severe, and the rash seems to be worse, so she is not feeling any better.
Dec. 8
Blood counts are improved a little more and she is also feeling at least a tiny bit better. She still has not had solid food in a week, has nausea, tonsilitis, and aching hips. The newest malady is a bad rash; this may a side effect of an antibiotic.
Dec. 6
We are hoping that she has turned a corner. She is still not feeling at all well, but her temperature has been lower and white blood cell counts are up significantly this morning.
Dec. 5
Nothing has improved, and she is now suffering from nausea and pain in the hips. The latter is probably a side effect of drugs to stimulate the bone marrow.
Dec. 4
Tonsils may be a little better today, but temperature has been up and down repeatedly. This complicates transfusions, since she cannot get blood or platelets while running a high fever.
Dec. 3
Yesterday was difficult. Both tonsils are now inflammed, althought the ENT has seen worse. She can't swallow anything solid and not much liquid,so she is now receiving two types of "food" by IV, as well as morphine, the usual antibiotics and other drugs, blood, platelets, etc. She also had a bad reaction to a transfusion, but the nurses responded to that quickly. The good news is that the blood work is showing evidence of new, normal, white blood cell production, an indication that the treatment regime is on course (white blood cell counts must rise before she gets another round of chemo). It may also be partly to blame for the pain in the tonsils, since the white blood cells are now able to attack the infection there.
Dec. 2
The fever has continued; has been over 104 several times but is now lower again. She has a very swollen tonsil which is also very painful, making eating difficult. An ENT should look at this today.
Nov. 29
Had a CTScan that showed nothing unusual this afternoon; fever is down below 100 tonight.
Nov. 28
Still running a fever around 101-102. She will need to stay in the hospital for at least 48 hours after the temperature has returned to normal (or near-normal).
Nov. 26
We thought Becca might be discharged today, but she is running a low fever, so she will stay in the hospital at least another 48 hours.
Nov. 25
Becca's hair was starting to fall out, so she got a quick crew cut from her Uncle Bill, who was visiting.
Nov. 24
Becca is back in the hospital this morning; she probably has a small infection around the site of the Broviac cateter and needs an antibiotic IV.
Nov. 22
Becca was discharged late yesterday, so we moved her out in the middle of a heavy cold rain (with a little bit of snow mixed in). She has a variety of medications to take while home; fortunately she keeps track of those well. She got lots of sleep last night for the first time in a long while.
Nov. 20
Becca has finished her first round of chemotherapy and, so long as there are no surprises in the next 24 hours, she will be discharged to go home tomorrow night. She will have to return for more chemotherapy in roughly three weeks.
Nov. 17
Becca has been up and out of her room most of the afternoon, working on a puzzle with friends. Her throat is much better; she has been back to eating solid food for a few days. Craig and Rebecca finish 1000 piece puzzle.
Nov. 16
Becca gets hair cut for Locks of Love.
Nov. 12
ENT here; prescribes mouthwash for uvula. Should be better in 5-7 days.
Nov. 11
Becca has pinched uvula that ocurred when the air tube was inserted during surgery yesterday. This is very uncomforable; she cannot swallow.
Chemo starts. She is getting three drugs in a course of treatment to run 10 days. Drugs are daunorubicin, cytarabine (Ara-C),etoposide.
Nov. 10
Surgery to insert broviac catheter (a tube through the chest into a main vein, which will be used for all IVs for chemotherapy, transfusions, etc.). Also gets a dose of chemo through a spinal while she having the surgery.
Nov. 8
Receives transfusion of blood and platelets prior to surgery for tomorrow.
Nov. 8
The diagnosis of acute myeloid leukemia was confirmed.
Nov. 7 2006
Becca entered the hospital today. She had been to the doctor for a sore throat a couple of weeks back. The sore throat improved, but the fever continued, so Kathy took her to her pediatricians (since she had never really had other family doctors) and they did blood work showing low blood cell counts that suggested leukemia.