Good News: Dr. Van Hoff called me on Thursday and said the Flow Cytometry results on Sarah's bone marrow biopsy came back negative relative to the presence of leukemia. This was the first of two higher resolution tests we were waiting on for her bone marrow. Next week we hear about the molecular level test results.
Not So Good News: Sarah was checked back into the hospital Thursday Night. She developed a fever of 102F and the doctors told us to bring her in. Several of Sarah's siblings have colds and we think she caught one too.
Sarah is now recieving TPN (Total Parenatel Nutrition) again. She is losing weight again and lost all the weight gain she made while on the appetite stimulant (Marinol) a few weeks ago. We are good with this as she needs to get as healthy as possible in preparation for her second bone marrow transplant. Susan and I will continue the TPN when Sarah is released from the hospital.
Unfortunately, Sarah still has encephalopathy. She had another EEG today at the hospital. The neurologist siad Sarah's brain wave activity was even lower than her last EEG(lastweek). This is most likely due to the two doses of Dasatinib she had afterher last EEG. She has been off the Dasatinib for alsmost one week now. The neurologist was pretty sure the condition would corect over time, but not much is known about Dasatinib use in small children.
Like I said, Good News and Not So Good News. God has done so much for us so far, but I believe he wants us to keep up the conversation. Plenty of things to pray for so please keep at it.
-Ben
Acts 12:5-11
Friday, December 19, 2008
12-19-08: Good News and Not So Good News
Thursday, December 18, 2008
12-17-08: Thank you God for Remission #2
I have had only limited access to the internet lately, so another late update on Sarah.
Sarah was released from the hospital Monday evening. Her blood pressure is stable and she’s taking two blood pressure medications. The doctors felt comfortable with this as long as we did.
Sarah had a lumbar puncture (intrathecal chemo) and a bone marrow (BM) biopsy today (Wednesday). This was an outpatient visit and we left the hospital ~3:30pm. On the way home Dr. Van Hoff (one of Sarah’s oncologists) called my cell phone with the initial BM results. Sarah’s BM was in remission!! There were no blasts (mature cancer cells) found in her BM under microscopic examination. There are also two higher resolution (molecular) tests being conducted on her BM. The doctor said he would expect to see some pre-blast cancer activity from the molecular testing. We’ll learn more over the next week.
The doctors told us Sarah might have a 10% likelihood of reaching remission this time. Sarah’s BM was 95% blast a little more than one week ago and now it’s not microscopically detectable in either her blood or her BM. The doctors said they did not expect these results and early on strongly suggested that no treatment was a reasonable course of action. Susan and I prayed really hard and often that she would reach remission again and I know that countless others have been doing the same. From Sarah’s doctors and nurses to folks outside of the US like India and Israel. I know that God always hears our prayers. He doesn’t always give us exactly what we ask for, but he always answers. Thank you God for hearing and answering our prayers. We are grateful that you directed us to continue treatment for Sarah and for the miraculously bringing her into remission again.
We are waiting for her recover from the encephalopathy that was brought on by the Dasatinib. We are watching Sarah and praying that within a few days she will be responding normally to her surroundings. She hasn’t been on the Dasatinib for 2 days now.
We aren’t sure where Sarah’s treatment is headed next. A revised chemo protocol should follow and then preparation for bone marrow transplant #2 I guess. More good news…
The initial BM donor database search yielded ~16 potential matches for Sarah. More on that as we get closer to a transplant.
-Ben
Numbers 11:21-23
Sunday, December 14, 2008
12-14-08: Sarah's Mental State Improves
Since Ben last posted, Sarah has had an MRI and EEG to check out her brain. The MRI was normal. Great news! But the EEG did show some slowing in her brain activity. The neurologist told us that the brain waves of children Sarah's age are 6-8 cycles per second but Sarah was only at 4-5 cycles per second. We don't know exactly what this means but we sure do know what it looks like. Sarah is definitely not herself. Upon waking in the morning or even from a nap she can talk and tell us what she needs or wants. Saturday she woke and said she was hungry (at 4 am...thanks dexamathasone). Sadly we had to tell her no, since she was NPO (no food or drinks) from midnight on, due to a scheduled Lumbar Puncture that morning. Even on the way to her procedure she continued talking and asking for things like candy canes. As the day progressed she went inward. When we talk to Sarah she does make eye contact and smile sometimes. But most often she stares off into space and doesn't respond. Her walking is less coordinated and her speech becomes more slurred as the day progresses.
Thursday, December 11, 2008
12-11-08: Shifting Ground
Sarah was released from the ICU tonight and returned to the children's inpatient section at Dartmouth Hitchcock. The ICU team did a great job getting Sarah's blood pressure stable. Sarah will not be sent home until her blood pressure is manageable with meds Susan and I can administer. We are hopeful she will be sent home over the weekend. We are ready for it!!
Sarah was fairly unresponsive today. Speaking was labored for her. She is having difficulty getting words out. She also has hand tremors and difficulty grasping and holding things. She did this Wednesday evening and most of today (Thursday). Interestingly, she was normal Thursday morning and the symptoms appeared sometime before lunch. One of Sarah's oncologist told us it was due to the 4 doses of Oxycodone she received to today to manage her headaches. Susan and I really want to believe that's what's going on. We are going to avoid giving her the Oxycodone and see how she does Friday.
I stayed with Sarah Wednesday night. It was very difficult to see her lose touch with reality so strongly and for such a prolonged period of time. Susan and I had a lot of anxiety over the same behaviour Sarah had today. I'm staying with Sarah again tonight and it was particularly hard after Susan left this evening. Sarah struggled in vain to answer when I asked her if her head hurt. She could not get the words out. She just barely eked out two strained words "I want...". She tried many times to express what she needed, but could not tell me. I decided to just give her a dose of acetaminophen, but her nurse said she could not have it. The doctors were concerned about liver related complications. I could not bring myself to give her more Oxycodone. Sarah was tired so I managed to get her to sleep with a little physical comforting. I have to say, this tore me up inside. It also resulted in much prayer by me that Sarah not suffer. Please do the same.
It definitely feels like Sarah and her family climbed a steep mountain only to find the ground shift and we are at the bottom of the mountain again. I'm not convinced yet that knowing the path up the mountain this time will make it any easier the second time around. It seemed surreal the first time, but to be asked to do it all over again just sounds impossible. Faith in a God that does the impossible comforts me.
Good news on the playhouse the Make-A-Wish folks are doing for Sarah. They finished the groundwork and a number of my colleagues at DEKA went to our house and unloaded the playhouse parts (thanks guys). Check out the link to see the progress.
I dropped the traditional BMT counting sequence in the post titles. It just doesn't seem to work any more. I suppose I'll start using it again as the second BMT starts approaching...
-Ben
Hebrews 11:6
Monday, December 8, 2008
Day +136: ICU Tonight
Sarah is in the Intensive Care Unit tonight. Her blood pressure spiked unexpectedly late this afternoon. We think it may have gone as high as 185/130. We are not sure as it was pretty hectic when the hospital staff finally got the vital sign equipment to register her blood pressure. The normal piece of equipment would not register a blood pressure, so they tried another just like it and it would not register a blood pressure. Sarah then yelled out that her head was "hurting really bad". They rolled in another piece of equipment and got multiple high blood pressure readings that dropped rather quickly, but leveled off around 150/115. At about the same time as the high blood pressure measurements, Susan noticed the red blood cell transfusion was pumping at a higher rate than it was supposed to be. The pump battery died and the nurse reset the pump rate wrong. The staff assured us the higher rate was too low to cause the headache or increased blood pressure, but we were skeptical.
At any rate, her blood pressure is normal now and she'll be monitored in ICU all day Tuesday. Sarah's blood pressure has been elevated since she began the chemotherapy, so she will likely go home on blood pressure medication. The CAT scan Sarah had to check her brain came back normal too. It was pretty scary for a little while today.
The good news today is her oxygen level is solidly good and her calcium is now at a normal level. Sarah's calcium has been low for a few days and she couldn't go home until it was normal. She will go home on calcium supplements too.
It looks like we will not go home until Wednesday at this point. Certainly Sarah needs to be in the hospital until she is stable.
We still feel good regarding Sarah's dropping WBC and feel confident she will be going home soon.
-Ben
Sunday, December 7, 2008
Day +135: Sending Sarah Home
Doctor Chaffee (Sarah's oncologist) is talking about sending Sarah (and the rest of us) home on Monday perhaps Tuesday. This is due to her excellent response to the treatment she has been given over the last five days.
Sarah's white blood cell count (WBC) has dropped over the last 2 days and as of about 2 hours ago it was at 1,100. Her peak WBC during this relapse has been 140,000. To put that into perspective a normal WBC is between 5,500-15,500 per microliter. The lower than normal WBC is wonderful news and indicates the cancer cells are dying very effectively. She has had a major hematologic response meaning the chemotherapy/Dasatinib treatment is working relative to her blood, but we do not know about her bone marrow yet.
Sarah's will be have a bone marrow aspiration on about Dec. 16 or 17 to check her bone marrow cancer level (cytogenetic response). We are praying that Sarah's bone marrow will be clean and free of leukemia. Once her bone marrow is defined as free of leukemia cells then she will tested for molecular remission. Ultimately we want her to reach and stay in molecular remission.
Sarah had jaw and leg pain yesterday from the Vincristine chemo she is on. She only had leg pain today, but apparently it hurts pretty bad. You have to carry her places like the bathroom or she cries from the pain. So, I was very impressed by her this afternoon when she said she wanted to go for a walk. I put on her shoes and pushed her pump cart as she walked (or really hobbled slowly) beside me to the playroom. I do not know what she was thinking, but she must have known that it would hurt pretty bad to take that walk. I think she just wants to be normal again.
Basically, Sarah is headed in the right direction and her therapy appears to be working. We thank God for what he has done and is doing. Susan and I are thankful that God directed us to choose this course of treatment. We will continue to pray for his guidance and that he will direct not only us, but Sarah's doctors too.
-Ben
Psalm 31:19-24
Friday, December 5, 2008
Day +133: Dasatinib Arrives
Sarah and her Mom (Susan)
Today
The drug designed to target Sarah's strain of leukemia (Dasatinib) arrived late in the afternoon today. We were anxious to get her started on the medication. Earlier in the day it looked like it might not show up until tomorrow (not good). At any rate, Sarah took her first 20mg pill tonight at 8:30pm. She'll be taking one 20mg pill at 8:00am and another at 8:00pm. She will also continue to receive chemotherapy similar to that used during her first induction.
Early this morning Sarah's oncologist gave us some great news. Sarah's white blood cell count went from 140,000 to 69,000 over the last day. This was a clear indication that the chemotherapy was being effective at killing the cancer cells in her blood. This should translate into some level of cancer cell reduction in her bone marrow too, but from our previous experience not the same level of reduction. We had to use Imatinib to get her bone marrow completely clear during her last induction. We are not using Imatinib this go around as her cancer cells have mutated and are now resistant to Imatinib. The Dasatinib will be replacing the Imatinib for Sarah's relapse induction.
More good news, Sarah's oxygen saturation level was normal all day. She had another x-ray today and there is still some cloudiness present, but reduced from Wednesdays x-ray. The doctors are still not sure what is causing this.
Sarah felt tired most of the day, but she is clearly in better shape than before we brought her back to the hospital and she seems to be heading in the right direction. She looked good and enjoyed visiting with her brothers and sisters and one set of grandparents.
I'd call today a good day for Sarah and her family. Again, I'm grateful to God for what he has given us.
Sarah's oncologist is diligent to remind us (kindly) of the real possibility that Sarah may not reach remission this time, but we are keeping that goal in site and remain hopeful. Please keep that goal in your prayers for Sarah too.
-Ben
Lamentations 3:24-26
Thursday, December 4, 2008
Day +132: Small Improvements
Sarah did not sleep soundly last night. Her oxygen saturation was low during the night so Susan and I sort of half slept/half watched Sarah. We were helping to keep an external oxygen supply near her face to keep her saturation level up. I was pretty tired today, but not as much as Sarah.
She has been very tired today. Her red blood cell count was low and the doctors planned to give her a transfusion, but they wanted to see the results of an EKG and Echocardiogram also scheduled today first.
There was concern that the low saturation level was due to difficulty with Sarah's heart. The EKG and Echocardiogram turned out clean and her heart function is normal. The blood transfusion is finishing up right now.
Sarah 's oxygen saturation level returned to normal, her elevated pulse dropped to normal and her shallow breathing appeared normal immediately after the red blood cell transfusion began.
Sarah's white blood cell count had been rising very rapidly (doubling in just one day) over the last several days, but did not rise at all over the last 24 hours. It could be the chemotherapy is beginning to work, but it's a little soon to tell.
The Dasatinib will arrive from California tomorrow to begin that part of Sarah's treatment.
I do not know if these improvements will hold, but we are very grateful for them. We remain hopeful that God will allow Sarah to remain with us.
-Ben
Wednesday, December 3, 2008
Day +131: Chemo Returns First
Sarah has been in the hospital one night and one day now. The stress for Susan and me is pretty intense.
Sarah is exhibiting low oxygen saturation levels similar to what she did during the bone marrow transplant. Her doctors found some fluid in her lungs from an x-ray this afternoon. We are trying not to freak out about this. It could be another case of pneumonia like we saw during Sarah's BMT. Sarah's doctors are working to get a handle on this.
Both Susan and I are going to be staying with Sarah at the hospital tonight. The other children are at home being watched by a close friend of the family. They are going to be coming back to Dartmouth to see Sarah everyday for the time being.
The chemo hasn't caused a great deal of suffering for Sarah yet. She has experienced some nausea and the steroids are starting to effect her behavior. Like I said, not bad yet. She had intrathecal chemo treatment today around 11:00am.
Sarah's primary oncologist gave us some more specifics regarding her treatment plan to get her into remission. They had been having trouble tracking down the Dasatinib Sarah needs, but managed to find some in California. She will begin the Dasatinib treatment Friday and continue chemotherapy in the meantime. They are checking her blood counts twice a day to detect increases/decreases in blood counts and determine if the treatment is moving her towards remission. Sarah's doctor said they'd could use apheresis to remove some of the white blood cells to buy some time giving the Dasatinib a chance to work. Apheresis is a process used to harvest different types of blood cells for uses like bone marrow transplants (oddly enough).
Please keep Sarah in your prayers over the next few days. She is a good little girl and we want her to grow up to be a good woman.
-Ben
Tuesday, December 2, 2008
Day +130: Hope for Remission
Dasatinib is a newly approved drug intended for difficult to treat leukemia's.
Friday, November 28, 2008
Day +126: Relapse
The blog hasn't been updated for a while, because things were progressing fairly smoothly. Sarah came close to needing a G-tube or another type of liquid nutritional assistance, but that was about it. Some appetite stimulants have helped her put on weight and avoid the tubes. Sarah has been doing super beyond that.
Susan and I have read a lot of childhood leukemia blogs and many of them describe how their child has relapsed after achieving remission...
Our blog is like that too now. Susan took Sarah to Dartmouth Hitchcock for her weekly outpatient visit. Her blood test results showed 8 - 9% blast content and her platelet count was only 40,000, really low. Sarah has relapsed. The cancer is back.
Monday, Dec. 01 Sarah goes in for a bone marrow aspiration and lumbar puncture, to see how far the cancer has progressed in her marrow and spinal fluid. Beyond that we can't share any more information. We just don't have any. There is no treatment plan yet. And as you might guess our options are pretty limited. We are talking with a number of doctors and hope to know more Monday or Tuesday.
In the meantime, please pray for Sarah to recover from her relapse.
-Ben
Wednesday, October 22, 2008
Day +90: Gleevec Side Effects
Yesterday was Sarah's weekly visit to Dana-Farber. They told us her blood counts had dropped. In fact, they dropped enough that she needed a red blood cell transfusion. Susan and I were very disappointed and a little disheartened to hear she needed the transfusion. We new there was a pretty good likelihood that the Gleevec she will be taking for about 1 year as a relapse prophylactic could cause her blood counts to drop. We had hoped she would not experience this large of a blood count drop though.
Dr. Wang told Susan the drop could be due to the combination of Gleevec and Bactrim (pneumonia prophylactic). Sarah will come off the Bactrim soon and we'll know more regarding blood count performance then.
Sarah is very energetic now and since we've adjusted her anti-nausea med level and times she seems to be eating and feeling better. We are trying not to fret too much about the reduced blood counts, but it's keeping us on edge a little.
Please pray that Sarah will be able to tolerate the Gleevec and her blood counts will climb once she's off the Bactrim.
I'll see about posting a picture of Sarah with her new hair on the next update.
-Ben
Sunday, October 19, 2008
Day +87: A New Playhouse
Sarah has been doing pretty good since the last update I posted, but since it's been almost 3 weeks since the last update, I thought folks should hear from us.
The Make-A-Wish foundation visited Sarah based on referral from one of Sarah's social workers at Boston Children's Hospital. The social worker is very kind and always stops in to say hello when we take Sarah in for her weekly visits. Make-A-Wish work with children that are terminally ill or have a life threatening illness (like Sarah). Susan and I and the other children all discussed possible wishes with Sarah for quite some before the visit by the foundation. In the end, Sarah wished for a pink playhouse for the yard. Cathy (at Make-A-Wish) said that Sarah's wish was super and wouldn't be a problem. I think they are giving her a bicycle too. The playhouse should be finished before snow sets in, so I expect to see them building it any day now. Sarah was pretty excited when the Make-A-Wish ladies showed up.
Sarah has been on her new medication to reduce relapse likelihood for about 2 weeks now. I think it has increased her nausea. She wakes up really queasy and vomits as well. A few days ago, she vomited 6 times in one day. Way too much. Sarah's main doctor at Dartmouth suggested we give her a moderate dose of Zofran (anti-nausea med) just before bed and a small dose when she wakes up in the morning. We've done this for two days and I think it's helping. We'll see how it goes over the next few days.
I don't think I mentioned on the last update that Sarah was going to have some blood testing done to check for cancer remission. The test (bcr-abl) for Sarah's leukemia type is very sensitive. It is intended to detect (at the molecular level) the chromosome abnormality associated with Sarah's type of leukemia. Well, the results came back negative meaning she is currently in remission at the molecular level with no detectable trace of her cancer. We were very grateful for that bit of news. Sarah will be tested every 3 months with the bcr-abl test.
The doctors really can't tell us that Sarah's cancer is gone for good. We are trying to accept that and frankly take each day as it is given. We love Sarah and the other children now as we did before Sarah's diagnosis, but something is different. I think something (or many things) have been added.
Please continue to pray that Sarah's cancer will not return and that her nausea will stop while she is taking her new medication (Gleevec).
-Ben
Wednesday, October 1, 2008
Day +68: Proactive Relapse Treatment
Sarah is doing super this week. She hasn't put on any weight this week, but she's eating noticeably more food. Still not much fluid intact so she's still on overnight hydration via pump. Susan talked with Dr. Wang (Sarah's Dana Farber Fellow) about dropping her overnight fluid intake by half. Apparently, Sarah's liver tests are coming back good. She is playing more and interacting with us more and more. She is not at all like she was before her diagnosis, but it's great to see her recovering and feeling so much better after the BMT. Spending time with her during her BMT low period puts a new perspective on a lot of things.
Susan and I both took Sarah to her weekly Tuesday visit to Dana-Farber yesterday. The medical team discussed some options with us regarding relapse mitigation and prevention. Primary on the table was reducing Sarah's likelihood of relapse. PH+ children have a fairly high relapse rate after BMT's. There are not any widely accepted prophylactic treatments for relapse of PH+ children after BMT's. That said, one option that has shown promise and some level of efficacy is the use of Gleevec (Imatinib) as a prophylactic for relapse. The doctors at Dana-Farber and Dartmouth-Hitchcock are willing to support this approach if Susan and I feel this would be best for Sarah. I called the principal investigator of the Gleevec prophylactic study today and after talking with Susan decided we would take this approach.
A relapse of Sarah's cancer would set off a chain of events that are more difficult than Susan and I want to think about. To paraphrase something I've heard said, "My fields are plowed and seeded and now I'll wait for God to provide the rain".
With Sarah doing so well, I feel selfish saying it, but the stress has been kind of high in our home since she has returned from the BMT. Susan and I both recognize this and I think that's half the battle of dealing with the stress. I know that Susan is trying and that encourages me to do the same. Please pray that we are able to support each other and our children too.
-Ben
1 Chronicles 28:20
Tuesday, September 23, 2008
Day +60: Watching and Waiting
Ice Cold Beach
Generally speaking, Sarah is doing good. She has not had any fevers for over 1 week and she is up and around now. She is eating (small amounts) and drinking fluids on her own (again, small amounts). Sarah still gets ~700cc of fluids overnight via her central line. The overnight fluids are there to insure her kidneys are not being damaged from the Cyclosporine. Once the doctors are confident her kidneys are are going to tolerate the Cyclosporine, then the overnight fluids will drop off. It's honestly a cakewalk to manage the overnight fluids relative to everything we've been asked to do up till know.
The Dana Farber doctors said we could take Sarah to the beach/ocean as long as we were not near any small groups of people and Sarah didn't swim in the water. We'll we did take her to the ocean and the kids had a great time. Since it was late summer, no one (absolutely no one) was there. Sarah did not do any swimming in the frigid New England Atlantic water, but that did not stop most of the other children. It's a high price (ice water) for fun, but those little ones are willing to pay it.
As of this week, Sarah is now going to Dana Farber every Tuesday for outpatient visits. If her Cyclosporine level is too high or too low then her medication level is adjusted and she goes in on Fridays for a recheck. The folks at Dana Farber did not contact us this afternoon with the status of her Cyclosporine level, so we don't know if we are taking Sarah in this Friday or not. I'm sure we will know tomorrow. Still more of the "make plans-break plans" approach to life for us. We make the best of it, like everybody else I suppose.
Susan and I have questioned Sarah's medical team regarding monitoring for relapse, relapse prevention and follow on treatment if relapse occurs. We began this questioning just before Sarah was released from the BMT ward at Boston Children's Hospital. We were not satisfied with the initial responses we were getting from our team, so we kept asking. Sarah has been through some pretty intense procedures to get rid of her cancer and we like to believe the cancer is gone, but children diagnosed with PH+ ALL have a fairly high relapse likelihood. It would drive you crazy to dwell on the fact that relapse is a very real possibility and I do not think that Susan and I do. However, as a parent you must believe that you are doing and have done what's right for the child that God has placed in your care. Sarah's medical team is great and they are working together to develop a "relapse management" plan. We should be able to share more by next Tuesday regarding the direction relapse monitoring will head.
As a family unit, we are trying to regroup and get some direction and routine under our feet. The children's chores (or jobs as I call them), home schooling, work, are all starting to stabilize again..., slowly. The stress level at home (mostly Susan and me) is still high, but we recognize it and are working on it.
We have always and continue to appreciate your prayers for Sarah and our family.
-Ben
The photos below are of Christopher and Katie at the beach last Saturday.
Wednesday, September 10, 2008
Day +47: Home-Hospital-Home-Hospital
Since the last posting on Day +40, Sarah has been released from a 3 day stay at BCH and had 2 outpatient visits.
Sarah actually came down with what looks like some kind of virus that put her into the hospital last week for 3 days (Wed. PM - Sat. PM). Since she was not getting any worse over those 3 days, she was released and came home Saturday. She continued with a low grade fever until Monday night.
I worked from home while keeping the kids on track Tuesday while Susan took Sarah to BCH for an outpatient visit. They checked Sarah's blood counts and her cyclosporine levels. The blood counts look good, but her cyclosporine levels were high. High cyclosporine levels are bad and can be toxic (mostly due to renal failure). She is not in any immediate danger, but the doctors want to keep her level deemed tolerable.
The high cyclosporine level Tuesday resulted in another hospital visit today (Wednesday) to check for proper kidney function and of course her cyclosporine level. We were told to reduce the amount we give her at home and bring her back in on Friday for additional testing. It looks like more work from home for me this week.
Sarah is still getting fluids overnight via pump since she hasn't ramped up on her own. Not a big deal, we'll keep working with her on fluid intake. It's just a matter of time for that to return to normal. Makes me wonder how many other things are going to return "back to normal". I would certainly like for Sarah to, but at the same time, I do love her every bit as much as I did before her diagnosis 4+ months ago.
Sorry for the delayed posting. We're still trying to catch our breath since Sarah's release from the BMT ward 2 weeks ago.
-Ben
Wednesday, September 3, 2008
Day +40: Well, She Got a Fever
This is day 40. I'm grateful to God to be able to say that. Things have been going pretty smoothly over the last week. Pretty smoothly means not perfectly smoothly, but then again what ever does.
I'll start with the good news again...
Sarah's blood counts have been going upward at a nice clip. The doctors are pleased with that and so are we. I guess Betsy had some good blood in her when she donated her bone marrow. Sarah has been eating a little. Not a lot, but she does eat. She is getting fluids via a pump through her central line over a 10 hour period every night. She does drink on her own, but not enough to come off the pump yet. Her vomitting has pretty much completely stopped which is awesome. The other children really enjoy having her around again and help her in any way she needs help. Sarah has enjoyed having them around and I'm certain being with them and in a familiar environment is having a positive impact on her emotionally and physically.
Unfortunatley...
Sarah developed a low grade fever this evening and Susan is driving her to Boston Childrens
Hospital right now. Both Susan and I (and Sarah) are really tired, but we have to follow the rules if Sarah is going to pull through this. If Sarah's temp measures 38C two times in one day or hits 38.5C once, then we call the doctors and they tell us to head down to the hospital. Neither Susan nor I are terribly worried with this low level fever and we think she will be out of the hospital again within a couple of days, but we can't take risks with Sarah's life at stake.
During Sarah's outpatient clinic visit yesterday, Susan heard about a small girl from the BMT ward that died from an infection in her central line. I am saddened for the family of the small girl and pray for theircomfort. I also pray that Sarah will stay on this side of the razors edge she is walking on. I also acknowledge that God wants Sarah and her family to be on that razors edge at this moment.
Sarah has made it over some big hurdles and we are relieved for that, but she has many more to go over throughout the next 6-12 months. Please pray the current fever subsides and Sarah is returned home quickly.
On a side note, I returned to work yesterday. One of my families biggest immediate challenges is to restore some semblance of order and routine in our life. Work certainly is a big part of that not to mention bringing home the bacon (and insurance coverage). I have been away from the office and not working for 6 weeks. That's the longest consectutive period of time I have not been working since I began working at the age of 16. My employer has been and continues to be very supportive with time off and monetarily among other things. I feel my company has demonstrated a level of loyalty and decency that is uncommon today. It has been 10 years of my life well invested.
-Ben
Matthew 14:26-32
Wednesday, August 27, 2008
Day +33: Sarah Goes Home / Entering a New Phase
Bubble Parade
Hugging Michael & Welcome Home BannerFriday, August 22, 2008
Day +28: Hospital Release is Imminent
It’s been a while since the last update, so I’ll do the best I can to fill you in without making the post too big.
The good news first:
Sarah’s blood counts are super. Sarah’s new bone marrow engrafted around Aug. 15, Day 21 (see graph at top of posting). They’ve steadily increased since then. Her ANC is ~1,760 and her WBC is 2,660 today. This is about what she registered when she was admitted on 7/18.
Sarah got to go outside yesterday. There’s a little park like garden at the hospital. Susan and a nurse took Sarah for a walk and to play there. The nurse had to come because Sarah’s morphine is continuously pumped through her central line.
Starting today, Sarah will no longer be on any continuous (24 hour) drugs or medication. That means she can be unhooked from the pumps for a short time each day. For Sarah (and everybody else) that’s a big deal. Sarah was really excited and clapped her hands when she heard that. I felt like doing it too. The next time the kids come down to visit will be the first time our family has been together since admission (5 weeks). It will only be for a few hours, but it will be the beginning of feeling “normal” again.
Not so good news:
Sarah was diagnosed with pneumonia. Earlier this week, the doctors told Susan that Sarah should be doing better than she is this far along into the BMT. They did a CT scan of her abdomen and noticed what looked like pockets of pneumonia in her lower right lung. It was a tough day for Susan and Sarah at the hospital. The doctors immediately put her on some other antibiotics. The doctors were actually glad to find the pneumonia since they now had something to assign her mystery symptoms to (low level fever, low oxygen sats at night). The pneumonia is prolonging her stay at the hospital, but probably only for 1 week. We hope to be out of the hospital be mid-late next week. We’ll see…
It feels like a steep, rocky cliff Sarah has been climbing up since her diagnosis on May 04. The BMT has certainly been one of the more threatening parts of that cliff, but she is still climbing upward. Sarah has a long road to recovery, but we feel really good about Sarah’s engraftment and are relieved to have that part of her treatment behind her.
We are thoroughly cleaning the house in preparation for Sarah’s return home. It’s good to have lots of little hands to help scrub walls. Monday, Susan and I will begin to be trained for Sarah’s care and preparation for her release.
Thanks for all the meal support that folks have provided over the last few months. That has taken a big load off our family and given us support and comfort throughout all this. However, with Sarah coming home within a week, we will not be accepting anymore offers for meals. We are tightening down on anything that could lead to family members getting sick. The Cyclosporine Sarah will be taking for the next 6+ months is intended to keep her immune system suppressed to prevent her new bone marrow from rejecting her body or her body from rejecting it. Keeping the family from getting sick is going to be a real challenge.
Please pray that Sarah will come home next week, that we’ll be prepared for her return and that no one in the family gets ill for the next 6+ months (I know that’s a big one to ask, but just do it).
-Ben
Saturday, August 16, 2008
Hanging On
Since most of the posts are about Sarah I thought I would let everyone know what has been happening at home, at least on one day at home this week. Tuesday morning Betsy and Jacob were going to get a ride down to the hospital with my friend Donna for a visit with Ben and Sarah. I over slept so we had to really hurry since the departure from Donna's home was 7:15 and it was already 7. As we were rushing out the door John, Judah, and Michael came up from their room. I told them as quickly as I could where we were going and to go back to bed. As I was reached the Jeep Michael came outside crying. He was standing at the top of the stairs crying and saying he couldn't breathe. He was pale, shaky, and taking rapid shallow breaths, and then he threw up. (Anyone guess where this is going?) Not knowing what to do I abandoned Jacob in the Jeep, came back into the house, sent Betsy out to get Papa, and paged our beloved pediatrician Dr. B.. Obviously Betsy and Jacob missed their ride to Boston and boy was Jacob annoyed. Though he really did try to hold it in. Dr. B. suggested we get Michael a blanket and sit quietly with a book. It didn't take too long for Michael's breathing to return to normal and for his color to come back. Dr. B. showed up about and hour later and declared (bet you already know) that Michael had an anxiety attack. Which I already guessed. It was so heartbreaking to see an actual physical representation of the stress that Michael (and probably all of our children) is experiencing as a result of Sarah's illness. It's no ones fault. We are doing the best we can. This is just really hard on everyone. But after seeing Michael's anxiety I am going to try to do better. Smile more, cry less, play more games, take everyone for a hike, say "yes" to ice cream, tell a joke (maybe), and I was thinking we might get a WII since those are games several of us can play together, and last but not least I am going to restart keeping a list of the things I am personally thankful for. Here is today's 1. I am thankful our children really do love each other (even though they fight) which is evident in that they play together and read to each other and do their best to make Sarah happy when they see her. 2. I am thankful for all the wonderful people out there praying for Sarah and all of us. 3. I am thankful for the selfless people who gave up a month of weekends and some weekdays, to put in our new floors. 4. I am thankful Sarah actually has an ANC 5. And for all of the dinners that have been brought to us over the last few months. Cooking for all of us is a lot, effort and money wise. Thank you! It's a short list but it is a start.
-Susan
Friday, August 15, 2008
Day +21: Turning the Corner
Sarah’s oxygen saturations (sats) have been normal today. This started during her afternoon nap yesterday. Her sats were good when she slept last night and during her nap this morning it still looked solid.
Sarah’s WBC and ANC are both climbing. Her WBC is at 1230 and her ANC is at 520. That’s right, she hit >500!!
She hasn’t had a fever or nose bleed for a couple of days too.
When the doctor made her daily rounds, she said “Sarah seems to have turned a corner”. I have to admit, it looks that way to me too.
The staff will start slowly dropping her antibiotics now. Her continuous morphine rate was lowered from 0.5mg/hr to 0.4mg/hr today. The rate will be decreased slowly over the next several days. She can still push the little button for an instantaneous hit when needed.
I’ll give another update in a couple of days, but for now Sarah is back on track and we’re feeling pretty good about that.
-Ben
Thursday, August 14, 2008
Day +20: Cells Counts Look Good
I’ve been on duty at the hospital since Sunday. Susan returns Friday and I go back home. Susan brought all the children to visit Sarah yesterday (Wednesday). Sarah responded well to their being here. The other children read her stories and played with her. It really lifted her spirits and made her feel happy. It made the other children happy too. The children are pretty normal, sometimes bothering each other, sometimes playing with each other, sometimes helping each other, definetly loving each other. It’s good to have a family and to me, the bigger the better.
Sarah looks great today. My previous posting showed a from-to photo set of Sarah and man did she look (and feel) different. We put that photo set on the posting not to scare folks, rather to give an idea of what was really happening and what Sarah really looked like. She’s having a hard time taking her meds over the last few days, but beyond that she is a real trooper. She is playful with the doctors, nurses and volunteer staff. She still inspires me with her resilience and how she just keeps actively participating in her own care as more stuff has been slammed at her. She is a superstar.
No transfusions for a couple of days. Nose bleeds have subsided with only one slight bleed yesterday. Sarah’s oxygen saturation (or simply sats) are still dropping (<90)>95). Normal range is 95 – 100. The doctors do not know why this is happening and said it’s not an expected part of her treatment. The doctors are doing an EKG and echocardiogram on Sarah today to rule out heart related issues. She had another x-ray Tuesday which came back clean (no problems found). They have very thoroughly tested Sarah to determine why the sats are low (their words) with no smoking gun yet. This morning the doctor told me she may simply not be breathing in as deeply when she sleeps and the mucocitis is closing off some airflow. The doctors are not worried about he low O2 sats directly, rather missing some underlying cause for the low sats. They may not definitively nail down the cause before it goes away which will be fine with me. More waiting and watching with this one, so keep the low sats in your prayers.
I asked if we could rest easy regarding VOD and the doctors more or less said yes. Can’t say shes all set, but that’s the side of the fence their on. I feel pretty easy on that front based on discussions with the doctors and what I’ve read about VOD too.
ANC’s are looking good! While her ANC dropped Monday to 190 (from 270 Sunday) and stayed at 190 Tuesday, it went up to 440 today. Her WBC also climbed and sits at 10800. A little up and down is OK, but it looks like she’s getting close to the targeted 500 for 2 days. We think her ANC is going to top and hang above 500 over the next few days. We feel great about that. Engraftment feels good. It’s not a good idea to test God and certainly not good to be presumptive about what God will and will not do. I simply believe that what he does (his will) is meant and done for good. His will be done, not mine. However, I will thank him for listening and acting on the prayers of so many people for Sarah and my family.
The doctors said it looks like the thing that will keep us from going home real soon is the low O2 sats. We are going to be working on the other items I listed on the previous posting so when the sats go up, we’ll be ready to head home.
-Ben
Genesis 45:3-8
Monday, August 11, 2008
Day +17: Engraftment Underway
Sarah Today
Sarah Before Diagnosis
The 7 children at home are doing OK, but I think they could really use more routine in their lives. Hopefully, routine will return in the near future. I do not want to just say “they’ll be alright” or “they can tough it out”, because how they are experiencing all this will have a lasting impact on their future. Susan and I are trying to involve them with visits to see Sarah and our going back home when possible. This is definitely a strain on our family and having Susan’s parents helping us has made all the difference. We are so grateful for their tremendous support.
We are still experiencing a mix of comfort and good news along side concern surrounding Sarah’s physical condition. The doctors assure us she is doing well at this stage. I acknowledge the clinical progress made, but she looks and feels physically shot and is sleeping most of the time now. The nurses tell us the constant sleeping is normal. I’m really hesitant to claim BMT victory yet, but I’ll quickly acknowledge God’s graciousness in saying “yes” to our and many others prayers so far. I would ask you to continue humbly and fervently praying for Sarah’s return home and complete recovery.
Sarah is sleeping through the night (and most of the day). Last night she sort of moaned or whimpered a lot. That kind of makes it hard to sleep when you’re on “hospital duty”.
Sarah is still getting platelet transfusions and nose bleeds. The doctors have determined that the swelling, and low oxygen saturation while sleeping, is due to reactions from the blood product transfusions. We are going to reduce the red blood cell and platelet transfusions to the absolute minimum we can manage. This should minimize her swelling and her low blood oxygen readings when she sleeps. It will also reduce her bodies’ likelihood of growing dependent on the transfusions and lengthening the time it takes for her body to do the heavy lifting.
We don’t hear anymore talk about VOD, so we think that scare is behind us. We will check on her bilirubin count later today though. Sarah is only slightly puffy from fluid retention and she hasn’t had a fever for several days. Please keep praying on this one.
The assessments of her CAT scans last week came out clean. No issues with her lungs and nothing negative showed up from her head scan.
Sarah’s ANC was up to 270 today. That was awesome news. That’s up from 150 last Thursday. We need her ANC to be above 500 for 3 days to be a candidate to leave the hospital. Her white blood cell count was also up (490). Now that it’s above 300, they’ll check her ANC every day.
I attached a graph of Sarah’s WBC and ANC progress to date. Sarah’s engraftment looks like it began sometime mid-last week. Click on the image at the bottom to see a larger version.
The targets for Sarah to go home:
1. ANC >500 for several consecutive days
2. Eating and drinking “enough” on he own
3. No longer dependent on intravenous drugs for pain management
-Ben
Matt 14:35
Thursday, August 7, 2008
Day +13: Bumpy 2 Days
Hanging Out with ASA and Sarah
More importantly though, Sarah’s Absolute Neutrophil Count (ANC) was higher today (just what we want to see). She went from 60 (per microliter of blood) on Tuesday to 150 today. Neutrophils are a type of white blood cell that fights infection and is the primary measure of when Sarah is “safe” to come home. Her white blood count (WBC) is also rising and sits at 240 today. Once her WBC hits 300, the doctors will check her ANC count daily. The ANC and white blood cell counts track together pretty closely.
Sarah started retaining fluid sometime after she was admitted into BCH. This was detectable from her daily weight measurements. Not incredibly troubling until yesterday afternoon when she became really puffy around her eyes, cheeks, lips and generally everywhere on her body. Not just a little puffy, but really puffy. At the same time, she developed a fever of ~102.5F and experienced pain in her stomach area, legs and arms. This bothered Susan and me and even more so when the doctors said they were troubled by these symptoms. The Fellow that was working the BMT ward and checked Sarah mentioned the possibility of veno-occlusive desease (VOD) which is a problem with the liver resulting from chemotherapy as part of pre-transplant conditioning. Apparently it’s difficult to diagnose VOD definitively until it’s progressed a lot and even then, there’s not a lot of treatment for it. The Fellow mentioned a fairly new drug they could administer if it turns out to be VOD. The team of doctors don’t think she has VOD though. Sarah’s abdomen is not distended and her bilirubin count is normal. These are two symptoms that are needed to say she has VOD. I’d be lying if I said we aren’t worried though. Sarah did look a little better today (less puffy) and her temperature was only slightly elevated (~99F).
Sarah had a CAT scan of her lungs today to check for anything that might have been missed or was not evident in the x-rays she’s had over the last week. She also had a CAT scan of her head since she was complaining of headaches over the last couple of days too. Initial assessment of the head CAT scan looked clean and the upper area of her right lung looked a little cloudy. We expect to hear more from the doctors after they evaluate the CAT scans more fully tomorrow morning.
I guess it’s sort of a mixed message today, we are seeing signs of transplant engraftment (good news), but Sarah has some mysterious complication (not good news). Sometimes the doctors don’t figure out what causes fevers with the BMT patients and frankly, it will not bother me if we ever know what is causing Sarah’s reactions as long as the reactions go away. Please pray specifically for Sarah’s current complication to subside and for her to stay on track for recovery.
-Ben
Tuesday, August 5, 2008
Day +11: Return of The Nose Bleed
Sarah had a rough night last night. She developed a nose bleed around 2:30am. Susan and I noticed new bruises and petecheia on her legs and head late in the evening. We pointed them out to Sarah’s evening nurse and said she probably needed a platelet transfusion, but the nurse did not actually give Sarah the transfusion until after her nose bleed started. That was a little irritating because we think the nose bleed could have been avoided. Normally a nose bleed is no big deal, but when you’re in Sarah’s shape things spiral out of control pretty quickly. This is the second time she went low on platelets and developed a nose bleed. The progression is something like this: nose bleed followed by vomiting from blood in her stomach followed by coughing and sore throat (on top of existing sore throat) then wheezing and then an x-ray to her lungs to make sure wheezing isn’t pneumonia. It made for a long night.
The goods news was that the new x-ray looked better than the first one. We don’t think there is any pneumonia concern at this point. No fevers today either. Sarah’s bottom is beginning to look better (after the skin breakdown from diarrhea).
The folks at Ronald McDonalds House put us in an apartment today. It is intended to bridge the gap from leaving the hospital to going home. We are not sure if we are going to stay there after Sarah is released from the hospital or make the drive from New Hampshire 2 – 3 times a week. The apartment will be a big help for now though. Only 4 people can stay overnight, so we plan to have some of the children stay there with one adult.
No real signs of engraftment yet. Sarah did have an Absolute Neutrophil Count (ANC) of 60 yesterday (Day 10), but until her counts are checked again Thursday (Day +13) we really can’t say the engraftment has taken hold. We’ll post an update on her ANC Thursday evening. She needs to have an ANC >500 to be able to be released. We definitely do not expect that this week, but we are hopeful about next week.
Thanks for your prayers and concerns and help. Please continue to keep Sarah and our family in your prayers.
-Ben
Sunday, August 3, 2008
Day +9: Nausea Back Under Control
Yesterday, Sarah threw up seven times throughout the day. The doctors took her off Reglan+Benadryl which is used for nausea. The Reglan was dropped to try and find the source for some tremors she has been experiencing. The tremors went away, but the vomiting came back strong. The doctor and I discussed the options for get the vomiting back in control. We’re trying a lower dose of Reglan and see if we can find the sweet spot for the tremors and vomiting. So far so good this morning.
Susan's mom and dad brought some of our children to visit with Sarah at the hospital Saturday, Jacob, Judah and Betsy. It really cheered Sarah up and she was sad when they had to leave. Her family means so much to her and it's really easy to take that for granted until you see her embracing them (not just hugging). Her love for all of us right now is hard to describe, I feel blessed to see and be a part of it.
No more news on the viral pneumonia. The doctors are watching her closely, but are not thinking there is much to do yet. Could be just a tiny case of pneumonia or maybe not pneumonia at all. The doctor told us they are going to continue watching her based on her current condition. We are actually encouraged by that.
Sarah has not had a fever since yesterday evening. She is taking a nap this morning. She did not nap yesterday at all. I don’t think it was because she was not tired. I think it was the endless vomiting. Now that she is back on the Reglin+Benadryl, her life is a little better. For Sarah, a little better is huge.
Susan and baby Asa (4 weeks old now!) came back to rotate at the hospital with me. I’ll be here until Wednesday or Thursday.
Thanks for all your prayers and meals and floor repair and cards and support with the children and emails…
We miss a lot of things from before Sarah’s diagnosis and would give anything to have her health fully return, but we will leave that in God’s hands and believe God is doing something beautiful in our lives. Please pray Sarah's new blood engrafts within the week and give thanks that God has given us so much love in our family.
-Ben
Ecclesiastes 3:10-12
Saturday, August 2, 2008
Day +7: Closer to the Bottom
I am back at the hospital replacing Susan and her father. Today (Friday) has been a good day for Sarah so far. She has managed to keep all her oral medication down and hasn’t thrown up yet. We colored some, made some small cards for the children at home and used the webcam to chat with Susan and the folks back home and of course slept.
Yesterday was not quite as easy. Sarah’s platelet count was really low and some blood was tracing her lips from mouth sores. The blood also drooled out onto her pillow while she slept. This did not cause her any pain, but it was a little disturbing to see. The nurses gave her a platelet transfusion last night due to her low counts. Sarah also developed a fever resulting in an x-ray of her lungs. The doctors told us it looked like a very mild case of viral pneumonia. They are doing some follow on testing to determine if she has pneumonia. Her fever has been gone today, but it returned ~8:00pm tonight.
Sarah’s has been on morphine for pain in her mouth and throat for several days now. She looks worn out and is sleepy a lot. She is not suffering greatly with the continuous morphine drip she is now on. Sarah can push a small button to momentarily increase the delivery of the morphine when she experiences heightened pain like when she takes her oral medication or vomits. She can only do this every 7 minutes, but currently only uses the button about once an hour.
The doctors told us Sarah is still doing great so you can imagine we don’t want to know what “not doing great” is like. We are grateful that she is doing as well (and as expected) as she is, but at the same time also very anxious and concerned about her fever and any infection that might crop up. Please pray specifically that Sarah will not have any infections that add complications to her recovery from the BMT during and after her stay at the hospital.
On a side note, today is Susan and my 16th wedding anniversary. Happy anniversary Susan, I love you.
Thanks for your prayers and kindness folks…
Your husband, father, son, brother and friend,
-Ben
Matthew 6:33-34
Thursday, July 31, 2008
Day +5: Update from Susan
Sorry for the delayed update on Sarah. I pretty much manage the blog and Susan and her father replaced me at the hospital Sunday (Day +2). I've also been busy over the last few days trying to get things ready at home for Sarah's eventual return.
-The below update is from Susan...
Sarah had a good day today. She played with toys and went to the playroom twice. I even managed to get her to eat a tiny bit, three bites of chicken noodle soup, a couple licks of ice cream, and a piece of chocolate. Wow! Right now she is playing with her Papa reading a pop up book. To turn the page Sarah says "ready set go!". Pop up books are so fun.
Yesterday wasn't such a good day. Sarah threw up about six times and had a noticeable increase in pain from mouth and throat sores. So we asked the Doc's to put her on a morphine drip. That means she gets a continuous supply of morphine through her IV line. She started at a dose of 0.1 mg. A very low dose. It seemed to make a difference yesterday but today when she woke up her face was SAD. When I asked her how she felt on the FACES pain rating scale she was the saddest face, a 10. So we upped her morphine drip to 0.3 mg. The little extra dose has made a big difference for her. She seems much more comfortable.
We had a little excitement yesterday when Sarah broke one of the connectors for her tubes. She was getting down off the parent bed and the tube went smack, right on the floor. She had an alarmed expression and so I said it's OK Sarah no big deal. When she continued to look at the tubes I realized it wasn't OK and the white lipids, that supply her fats, were leaking onto the floor along with her blood. I quickly told Dad to "press the nurse button and go get the nurse". He ran out in to the hall and said, "we need help". Boy did they come fast that time! I guess that happens all the time. But it sure was alarming seeing Sarah's blood dripping down from the opened tube, and knowing that anytime those tubes are opened they pose a risk for infection.
She has started to lose the rest of her hair, just a little at a time right now. Her mouth is starting to look a bit strange as a result of the conditioning, red gums and the inside of her cheeks and the roof of her mouth is starting to break down. There is some swelling and white patches, and the beginning of the red sores.
-End of Susan's update
The doctors tried to brace us for the need to administer morphine to Sarah. The pain would be pretty unbearable for her if not for the morphine. We were not excited about giving it to her,but the time came to do so. Please pray it will continue to be effective and that she will not need to be on it long. One of the biggest risks with Bone Marrow Transplants is infection. An infection can move pretty quickly in a person with no immune system. It is one of my biggest concerns at this stage of Sarah's treatment. I know she is in a solid medical facility with top notch medical folks, but continued prayer for her is much appreciated.
I go back to the hospital tomorrow, Thursday to replace Susan and John (Susan's Dad). By the way, Betsy is doing great after donating her marrow last Friday. She seems 99% from what I can tell. The other children are looking forward to seeing their mom again tomorrow.
-Ben
Saturday, July 26, 2008
Day +1: Past the BMT
Sarah Comforting Betsy After Her Bone Marrow was Harvested
Sarah’s transplant was yesterday. Harvesting the bone marrow from Betsy was an actual operation, albeit a seemingly simple one. I was with Betsy when she was prepped and given the anesthesia that put her under. She was very brave and gave no indications she was nervous, even when asked. Susan was with Betsy when she was moved into the recovery room. Neither of the girls felt any pain, but Betsy was groggy most of the evening. The day was mostly filled with activity surrounding Betsy, but the high point of the day culminated with Sarah’s transfusion.
It was very heartening to see Betsy’s donated blood in the clear IV bag as they hung it on Sarah’s pump pole. Sarah has had blood transfusions before, but knowing what this transfusion was for and who it came from was a very profound moment for Susan and me. I can’t really describe fully how it felt watching Betsy’s blood travel down the little tube and go directly into her sister Sarah’s little heart. It was all at once unbelievable and wonderful. While Sarah’s fate is still uncertain to us (but certainly not God), the change it will make in Sarah’s life will be to give Sarah a chance to continue her life. The change in Sarah’s life can even be measured in her blood type, changing from type A+ (her original blood type) to O+ (Betsy’s blood type).
I am thankful to God for providing two donors for Sarah, but I will also always be grateful to Betsy for what she has done.
The doctors told us what we should expect over the next couple of weeks. Betsy will grow her donated bone marrow back completely. Sarah will be watched closely to manage any pain that will likely develop from the radiation treatment. Morphine will be administered if she is suffering greatly. We are told each child responds different physically, so we’ll be watching and praying that she stays strong.
Some photos and a short video of Sarah and Betsy during “Day 0” accompany the post today.
-Ben
Isaiah 64:3-9
Sarah Recieving Her Bone Marrow
Thursday, July 24, 2008
Day -1: One More Day to Transplant
It’s about 9:00am and Sarah just got back from radiation treatment. She got tired so she’s napping now. Sarah has one more radiation treatment this afternoon at 1:00pm. When she gets back, we can treat her skin for the soreness from diarrhea with ointment. She hasn’t had any ointment or oil or anything on her skin because whatever is on the skin during radiation will lead to skin burning and extreme discomfort. Believe it or not, she has not been complaining like you’d think and certainly not like I would be about the soreness. It makes me wonder if she just can’t feel it anymore.
Sarah slept through the night and I did too (mostly). Sarah is becoming comfortable with the nurses and plays some with them when they visit her. Yesterday Sarah told me the night nurse that was assigned to us for Wednesday loved her. She said is was because the nurse was nice and kind to her.
The doctors and nursing staff have been asking (a lot) if she has started to feel any pain form digestive tract breakdown yet. She has not. They said she can start having morphine when she/we feel she needs it. The care team makes it sound inevitable and I am honestly a little worried about it. Please pray that she will not suffer greatly from this side effect.
Tomorrow is the "Day 0", the day of the transplant. Susan's father is bringing Betsy to the hospital today for Pre-op to get ready for the BMT Friday. Friday will be an exciting and busy day for us. I’ve read literature that describes the transplant as “rescuing” the patient. Not from the original disease, but from the result of the high dose chemo and radiation. That’s a little frightening to think about, but we're still feeling positive about Sarah's outcome.
I'm glad Susan went home for a couple of days and spent some time with our other children. It's easy for them to slip into the crack with what's going on with Sarah. It is something Susan and I are trying to manage, but I know whatever we do is not going to be enough emotional support for them during this period in our lives. Thankfully, God is part of our family and he is always with them.
-Ben
Ephesians 3:14-16
Tuesday, July 22, 2008
Day-3 Radiation Side Effects Begin
I thought it would be a good idea to list some specific things that folks could send Sarah at the hospital to keep her spirits up:
Sarah knows she is getting radiation treatment, but does not know that the radiation treatment is what is giving her the nausea and diarrhea. We’ll tell her more about that once the treatment is over this week. For now, she doesn’t mind going to the treatment and being still d
uring it.It’s been a busy day, so I’m cutting the post a little short today.
-Ben
Sunday, July 20, 2008
Day -7: With Sarah
Sarah napping in the BMT ward
Susan stayed with Sarah in her room Friday night and I stayed at the Ronald McDonald house about 0.5 miles away (a brisk 10 minute walk). I stayed with Sarah last night. Susan and I will be at the hospital the first couple of days into Total Body Irradiation (TBI) that starts Monday. Tuesday evening, Susan will be going home to spend time with the other children until Betsy comes to the hospital for the transplant Friday. Susan is starting to doubt the wisdom of her staying with Sarah alone, without another adult. Susan was nursing Asa last night when Sarah started getting sick. We'll just take it as it comes.
Asa did not give Susan any trouble Friday night though. He pretty much nursed and slept. The nursing staff at Boston Childrens Hospital are very kind and attentive to Sarah’s needs.
Our friends John and Shera came to see us today. Since there are eight in their family they had to wait in the Resource Room and take very brief turns visiting with Sarah in her room. When they left Sarah told Susan that it was “so fun playing with them”.
Sarah playing with DoraThursday, July 17, 2008
Day -8: It's Time To Go To Dana Farber
The day has come to head to Dana Farber. We've gotten most of the house prep done that's needed, ordered air purifiers, hung up soap and towel dispensers, ordered the water testing kit, cleared out and painted the room Sarah will stay in when she returns, etc., etc., etc...
Right now, we don't feel like we know what to do. We're just going down to Dana Farber and seeing what happens next. We sort of think we now what to expect, but with absolutely no control over it.
The stress in our house over the last week has been palpable, but we have managed to laugh about stuff just about every day. More and more folks are helping us or are lined up to help us with meals and jobs that need getting done with the house (doors that rotted out, floors that are getting thinner, painting walls, going to the dump). I know I mention the help from others on most of the postings, but it really is an important, valued and appreciated part of what's happening within our family.
It could be a tough weekend/week with the chemo/radiation so please take some time and pray specifically for Sarah to respond favorably to the treatment this week.
Tuesday, July 15, 2008
Day -10: Hospital Hand-off
This past Monday (7/14) was the last time we will visit Dartmouth Hitchcock for several months. Sarah's next hospital stay (beginning 7/18) will be with the folks at Dana Farber for the BMT. It feels a little strange saying it, but we'll miss the doctors and nurses that we've grown accustomed to seeing at Dartmouth. They have been very good and kind to Sarah, Susan and the rest of us. We will always remember them in our prayers and in our hearts. We will try to transition back to Dartmouth after the BMT, if Sarah's continued treatment allows.
Sarah had her PICC line removed from her arm and the replacement central line installed (Broviac) Monday, 7/14. The new central line is a little unsettling (appearance and apparent frailness), but we'll get used to it. Accepting the unacceptable, part of our new life. I should mention that Sarah is feeling and doing great. She does express some discomfort with the Broviac so soon after the surgery, but that doesn't stop her from playing, laughing and enjoying her life. I always wondered why people described their sick child as an inspiration or their hero, but Sarah is straightening that out for me.
The days on the blog will be recorded from negative to positive until "Day 0" (transplant day) is reached. After Day 0, I'll record them in positive numbers. The folks at Dana Farber said that's how it's done, so we're on the bandwagon. I suppose it's like starting with a clean slate. Apparently, it's sometimes looked at as another or a new birthday too.
-John 3:6-8
Thursday, July 10, 2008
Day -15: Getting Ready for the BMT
It has been a busy week for Sarah (and the rest of us) so far.
On Wednesday, Sarah went to Dartmouth for eye testing, bone marrow aspiration, bone marrow biopsy, intrathecal chemo therapy, blood work and a CAT scan. It was a full day, but we got it all done.
Today (Thursday), Susan and I took Sarah, Betsy and Asa to Dana Farber for a discussion on the possible side effects of radiation. They all sounded bad too us, but we didn't hear anything we haven't heard before, so we were not in shock at any rate. Since Betsy has been chosen as the bone marrow donor, she had to be evaluated by a psychologist before the BMT. Susan and I insisted one of us be present during the evaluation which took a good amount of persistence on our part as the psychologist was very much against either parent being present. We won, they lost.
Sarah is feeling very good and is off all medication until admission on 7/18 for the BMT. Her blood counts are good and at the level the doctors at Dartmouth and Dana Farber want to see them. It breaks our hearts to know that she is feeling, looking and behaving so good and healthy and in about 1-2 weeks she is going to be hammered with some pretty intense medical procedures that will render her incredibly and life threateningly sick. Please pray for Sarah to be strong and respond positively while she is at Dana Farber. All of the children are special to us, but God is using the recent events in Sarah's life to remind us how much she means to us. He is also showing us how much he loves her through (and by using) us and in doing so, showing us how much he loves us.
We have a list of things we either need to do or need to buy before the BMT (really before Sarah returns home from the BMT). The buying part is easy, the doing part is a challenge. I'll post some of the things we are trying to do before Sarah returns home. If you think you can help out with some, send us an email (see calendar at bottom of blog for email address). Thanks for the help we have already received and continue to receive. Even small things have made a meaningful difference (like Sarah receiving a get well card, or calling to see if we need anything at the drugstore while out).
-Hebrews 12:9-13
Friday, July 4, 2008
Sarah has a new brother!
Below...
Thursday, July 3, 2008
Support Calendar
Someone we know suggested we add a calendar to our blog so folks could know the areas we could use a hand with. Many folks have also offered to provide support over the last 2 months. So, the other day I added a calendar at the bottom of the blog.
The calendar shows some of the support that would help our family (other than prayer). I do not want to downplay or minimize any of the other types of support we have been receiving (email, phone calls, gifts and so on), so please continue to provide support as you can or see fit.
There are also things people are doing, might be doing or have offered to do for us that are not shown on the calendar. In addition, things may show up and disappear from the calendar fairly erratically as we learn more about Sarah's needs and treatment. I guess I'd ask you to be flexible with us as we work through what's happening in our family.
Send an email to me (Ben) or Susan using the link below if your heart is moved towards providing some support (or for any other reason). If you have support you can provide that is not shown on the calendar, feel free to suggest it. I may not necessarily take you up on it, but I will always be grateful for your kindness and outreach.
mailto:jonesshow@msn.com
Not much of an update to give on Sarah today. She had a red blood cell transfusion at the hospital yesterday and a hearing test. Both went well and her hearing is normal. Sarah will have a full day of testing at the hospital next Wednesday that I'll describe on the next posting. Susan is going to be working with her midwife this weekend to see if an early delivery can be induced. It would be good if the baby came sometime before Sarah is admitted to Dana-Farber on the 18th.
Tuesday, July 1, 2008
BMT is Scheduled
Sarah's PICC line did not need to be removed. Thanks for all your prayers on this. We were so relieved that it could stay and be her means of access for blood work since there is no pain involved. The PICC line will need to be replaced soon with a Broviac central line. The Broviac is a longer term replacement for the PICC. The Broviac replacement is scheduled for Monday, 7/14. Sarah will be anesthetized for the replacement.
We made it to the meeting with the folks at Dana Farber today. It was a long day and filled with lots of questions and answers. Johnny, Betsy and Sarah all had blood drawn today for testing to choose which of the two will be the donor. Sarah is scheduled to be admitted on Friday, 7/18. We learned about what to expect during and after the BMT.
Some key learning's from today's visit:
1. Sarah will be in the hospital for 4-6 weeks and visiting 2-3 times a week after release.
2. Sarah will be vomiting a lot (up to 3 weeks) after radiation ends and be treated for pain (mostly from mouth sores) with morphine.
3. Sarah will be allowed up to 3 healthy visitors in her room at any given time throughout her stay.
4. Sarah will not likely have any cognitive impairment from the radiation, but will likely be infertile.
5. After Sarah returns from transplant, she can not be in public places (restaurants, libraries, stores, church, etc.), but she can go outside (yard, hiking, etc.) for 6 - 9 months.
6. After Sarah returns from transplant, only immediate family members are allowed to be inside the home for 6 - 9 months.
7. The doctor said Sarah's biggest post transplant risks were from other people and poop. There are other things we should be careful about, but these are the biggest.
I will not list the multitude of other things discussed or the update would never end today.
It is difficult to take all this "one day at a time" and Susan and I are challenged to keep our stress in check. Please pray that Sarah will continue to respond well to her different treatment types and overcome her cancer.
-Psalm 119:74-76
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