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

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

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

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

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

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

Day +130: Hope for Remission

Sarah Today...

My update on Sarah's relapse is late due to our computer being down yesterday, but here it is...

We were not given very encouraging news from Sarah's doctors. We essentially have three options regarding Sarah's relapse:

1. Try to achieve remission using "moderate" chemotherapy w/Dasatinib

2. Try to achieve remission using "extreme" chemotherapy w/Dasatinib

3. No treatment (other than minimizing discomfort)

Dasatinib is a newly approved drug intended for difficult to treat leukemia's.

If options 1 or 2 successfully get Sarah into remission, we'd need to keep her in remission for 3 months and shoot for another bone marrow transplant. Options 1 and 2 have ~10% likelihood of getting Sarah into remission. The difficulty Susan and I have with options 1 and 2 are the low likelihood of achieving remission coupled with the suffering Sarah would likely see with the chemotherapy. She would also possibly spend many of her last days in the hospital and not at home.

The difficulty we have with option 3 is obvious.

Sarah's bone marrow is 95% blasts (cancer cells), but her spinal fluid showed no cancer cells. After much praying by us and many others God led Susan and I to go with option 1. We made that decision this morning and arrived at Dartmouth this afternoon to begin treatment.

We should know if the treatment is being effective in about one week.

We are very hopeful that God will and know that God can cure Sarah of her cancer. Please pray specifically that God will put Sarah back into remission.

-Ben

Matthew 14:24-27

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

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

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

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

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.

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

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

Day +33: Sarah Goes Home / Entering a New Phase

Bubble Parade

This news is a little late coming to the blog, but Sarah was released from the hospital today!

You can imagine she has been doing pretty good at the hospital over the last several days. She finished her antibiotics for the pneumonia Monday and hasn't had a low level fever for ~4 days. Her oxygen saturation is back to normal too. Her blood counts continue to rise so engraftment is seemingly behind us too.

She went home taking 7 different medications including some nausea meds as needed. She will also be getting hydration via her central line for 10 hours every night until she gets the fluids she needs orally. She is drinking close to half what she needs to right now. Still not eating, but now that she is off the Total Parenteral Nutrition (TPN) her appetite should return soon. The doctors are mostly worried about her getting enough fluids not the food so much.

We take Sarah back to the hospital tomorrow AM for an outpatient visit. Seems a little silly to go back so soon, but at least we leave the same day. She visits the hospital every ~3 days for now.

Sarah has a lot of fatigue which we hope will diminish greatly soon. Fatigue is a common condition after a BMT, so we will try not to worry too much is it takes a while to improve.

The nurses give the kids a "bubble parade" when they are released off the BMT ward. Sarah has watched a lot of other kids have their bubble parade and really liked her turn under the bubbles.

Today was a huge milestone for Sarah and her journey with this illness. We enter maintenance mode now and hopefully that's where we'll stay until Sarah recovers. I'll be posting Sarah's progress once or twice a week and on occasion as she moves along. I know we as a family and Sarah specifically have a long road to recovery.

In this stage, infections for Sarah can be life threatening so, we'll be watching for any signs of infection closely and doing what we can to prevent them. We'll also be watching, but hopefully not dwelling on, signs of a relapse of Sarah's cancer. I will be talking with Sarah's doctors regarding monitoring for relapse and provide an update on how this is done on a future posting.

Please pray that Sarah will avoid infections or other BMT related complications and she will not relapse with the original cancer. I thank God for his kindness and mercy and all the things he has been doing in our lives (and I believe others lives) through all this. I'll make a point of sharing some of these things in a future blog. And, thank you for your prayers for Sarah and our family. They do not fall on deaf ears.

-Ben

Isaiah 54:7-16

Hugging Michael & Welcome Home Banner

Day +28: Hospital Release is Imminent

Sarah's Blood Count's Today

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

Judah and Michael Cleaning for Sarah

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

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

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

Day +17: Engraftment Underway

Sarah Today

Sarah Before Diagnosis

I am changing places with Susan today. She goes home and I will be at BCH. Susan has been at BCH for 3 days and she needs a break.

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