2/06/09: Sarah Relapses Again?

Sarah has her blood checked every Monday and Thursday. The results from her blood work Thursday indicate she has likely relapsed.

We took Sarah to Dartmouth today so her doctors could do some more blood work and confirm a relapse. Susan and I told the doctors we wanted them to focus on getting Sarah back into remission and continue moving towards a 2nd BMT. Hospice palliative care was not going to be one of our options. We see a future for and with Sarah. God has given Sarah the strength to weather a lot of adversity and come out right on top of her game. I am mightily impressed with what God has done and shown us. I am at also mightily impressed with my daughter overcoming everything that keeps coming her way. Susan and I will stand with God and lift our daughter up every step of the way.

The doctors were giving us a moderate chemotherapy and very aggressive chemotherapy options. Early in the day, they suggested we go with the moderate and use the aggressive chemo as a fallback position. The doctors changed positions (to the aggressive chemo) when Sarah’s blood work results came in though. Sarah’s blast count had climbed a lot within one day and they were pretty concerned. Sarah was admitted to the hospital and the plan is to start the aggressive chemotherapy Saturday. The doctors are conducting one more blood test (flow cytometry) to confirm that Sarah should begin the aggressive chemotherapy sometime Saturday.

The 2nd BMT is on hold until remission is held for 3 – 4 months.

Please pray the aggressive chemotherapy will not be necessary and that Sarah’s stay in the hospital will be short.

-Ben
Ephesians 6:13

2/04/09: Dana-Farber Discussion Today

Susan and I traveled to Boston to meet with Dr. Leslie Lehmann the BMT director at Dana-Farber. Dr. Lehmann did a great job sharing her thoughts and the options they’d recommend for Sarah’s 2nd BMT.

One option is to move forward as quickly as possible with the 2nd BMT. Sarah would probably be admitted in mid-March with this option. The upside to this approach is very little time for Sarah to relapse before the 2nd BMT. The downside is Sarah would not have very much time to gain her strength before the treatment. I can say firsthand that the BMT process takes a heavy toll on your body. The Dr. said we should expect the 2nd BMT to be harder on Sarah and a longer hospital stay.

Another option is to wait a little longer based on some historical learning’s regarding 2nd BMT’s. Sarah would be admitted around the end of April with this option. Dr. Lehmann said holding a remission for 4 months seems to be part of a more positive outcome for the kids that undergo a 2nd BMT. The upside to this approach is Sarah will have a little more time to gain her strength. She would also be able to spend a little more time with her family before the 2nd BMT. The downside is that Sarah might relapse again before the BMT and she’d need to get back into remission. Dr. Lehmann said her likelihood of survival would go down if she relapses again and goes for another BMT.

The last option is to wait and see if Sarah relapses again. There would be no scheduled BMT with this option, but Sarah would continue to have "maintenance" chemotherapy and maybe DLI too. The DLI would be a reinfusion of Betsy’s bone marrow periodically in an effort to initiate some GVL (Graft versus Leukemia). DLI is deemed as a fairly ineffective treatment for ALL. The upside is that Sarah would be at home a lot more. She may not need the more intense therapy of the BMT to be cured. This is the least likely approach to cure Sarah’s cancer based on the doctor’s experience.

Susan and I are going to be praying for God’s direction regarding the 2nd BMT over the next few days. Please pray that God provides the guidance we need regarding this. Susan and I appreciate the support many of you provided our family during Sarah’s first BMT. That help really made a difference for us during a very hard time in our lives. If you’ve got a little left in you, we’d welcome it again. I will update the blog with specific things that would be a big help to our family again in the next few days-to-weeks.

We are just starting to work out the logistics of another BMT for Sarah. We’re not sure what we’re going to do if Sarah is in the hospital longer this time (possibly 4 months), but we’ll work something out. The Boston Ronald McDonald House only allows 4 persons to stay overnight. We want all our children to be near the hospital this time. Please let us know if you have any ideas or suggestions.

From Susan’s last update, Jacob and John are now healthy again. Thankfully no one else is currently sick. Sarah still feels great and behaves like an (above) average 4 year old. We thought Sarah and our family would be out of the woods by now, but that’s not how God’s working it out. It’s God’s plan, schedule and timing that we are going to have to work within. Please pray that our family will have strength, courage, hope and faith as we make our way through this.

-Ben
Isaiah 40:28-32

This is the day

This past week has been great. Sarah has continued to feel good and behave fairly normally with the exception that she is still not eating much. That is OK she's still getting TPN. She played outside in the snow and in the Pink Playhouse a few times and she also had the opportunity to experience some well deserved time in the naughty chair. Funny thing about that naughty chair is that Christopher, who is disciplined in the regular way of this house, thinks the naughty chair is fun. He finds his own stool and sits right beside to her. Next thing ya know they are both scooting their "naughty chairs" all around the kitchen. Those two. What a riot! Thanks to that naughty chair there has been a lot less fighting between those two. And Sarah has been working on being polite and kind because "we are polite people".

This week we did have the challenge of illness in the house, again. This time it was Jacob and John. They both presented with a fever at first but progressing to upper respitory stuff. Poor John's temp was 103F. We quickly isolated those two in their bedroom and disinfected everything in the house that can be disinfected, so far no one else has come down with it. I felt really bad making them stay in their room alone when they felt so crummy and maybe needed some TLC from the mommy so I tried to visit them often with OJ and hot tea. But sorry no hugs or kisses for those two, I kept my distance! Before Sarah got sick I used to allow the sick children to come and lay on the couch but that didn't really help the rest of us since we always managed to pass illnesses around. New way is better.

We did get one "almost" worrisome phone call about Sarah's last bone marrow. The doctor called and said they actually saw some blasts in it but they were not sure if they were normal blasts or leukemic ones. After we got off the phone I alerted the prayer warriors and got them praying and purposed in my hear to do Prov. 3:5 at least until we got the conclusive results. We did not spend the day worrying but instead we spent it in thanksgiving for God's continued grace. Later, in the afternoon the doctor called back and said, after more testing they appeared to be normal blasts. Yeah! Another prayer answered.

Through out Sarah's illness we have faced many obstacles and and many scary things but God has gotten her and us through each one. Each one of those scary things have worked out. Most recently the encephalopathy, the hypertensive event, and lastly this last bone marrow. We are SO grateful for all of those answered prayers. Of course, as Sarah's parents it is our wish that she will be healed and continue to live in our family and grow up and marry Joseph Camuso (his mom and I worked that out) "but if not" our hope is in the Lord.

One interesting thing that did come up a couple days ago was a conversation I had with Betsy our 10 year old. She shared with me that she always knew that God was real and answered prayers because she read it in her Bible; but NOW she KNOWS because He has answered her prayers for her little sister. She told me she has more faith in God now.
I asked Betsy what she would think if God chose to "do something different with Sarah".
Betsy said "you mean if she goes to heaven?".
"Yes".
She told me that she would still know that "God is good and that he doesn't do anything wrong or make mistakes".
My greatest prayer for our children has been that God would be real to them and they would live for Him. As for Betsy.....another prayer answered.

Love you all and KEEP PRAYING.
Susan

1/23/09: Back from the Hospital

Sarah has been in the hospital for the last three days to begin more chemotherapy now that she’s in remission. She was given Dasatinib only to see if she would develop encepalopathy again. She has done great without any signs of encepalopathy or other serious side effects. The dose of Dasatinib will increase from 10mg per day to 10mg twice daily next Monday provided she continues to tolerate the current dose. The doctors are pretty sure Dasatinib is the primary drug that got her to remission.

The last PCR-ABL molecular test came back positive. She is still technically in remission, but the positive PCR result means she really needs to keep getting chemo to prepare for the second BMT. Yes, Susan and I are concerned about the last PCR result, but we are hanging in there and maintain hope for Sarah and comfort that God is with us.

Another bone marrow aspiration and PCR-ABL test is scheduled for next Wednesday. Please pray for encouraging news from next week’s tests.

Today Susan scheduled an appointment with the BMT director at Dana-Farber. We will be discussing the details of a second BMT for Sarah with Dana-Farber on Feb. 4th.
Susan and I are comforted and grateful for the guidance God gave us to move forward with chemotherapy after Sarah’s relapse. Sarah feels great and laughs and plays a lot. She eats dinner with us. We read stories to her. She sleeps with her sister. She sleeps with Susan and me. She dances and is happy more often than not. She wouldn’t be doing any of this but for God’s direction.
-Ben

Sarah is doing great. She is playing quite energetically with her siblings, laughing, pretending, asking lots of 4 year old questions, and quite normally fighting like crazy with Christopher. And I am loving every minute of it. Every minute.

Yesterday one of Sarah's doctors called to let us know about the latest pcr-abl and this one, you might want to sit down, was not negative. This one showed .15% of the cells had the PH+ genetic mutation. Not the news we we're hoping for. We we're praying for a negative. But still we are grateful it was a low number. Only problem with that number is that that bone marrow was taken two weeks ago for testing. Which means we don't know what her marrow looks like today. Deep sigh. Just one more opportunity to "Trust in the Lord with all your heart" Proverbs 3:5

Since Sarah's marrow has shown some very small signs of recovery, her platelets are trending upward and can I say at a snails pace, it is time to continue with the chemo. We now have a plan for next week. Sarah will be admitted into Chad on Monday for a dose of Dasatinib and some close observation by the Docs. That's all. We'll see how it goes and what happens. Hopefully she won't have any of the neurological issues this time.

I am not sure if I'll have Sarah duty by myself at the hospital or not. Ben is running out of his Medical Family Leave Act time and he kinda needs to save it for Sarah's second BMT. We'll see how God works it out.

01-07-09: Sarah Home Again

A lot has happened since our last post. I'll try to recap as accurately as possible. Sarah spent most of December in the hospital due to fevers and neutropenia and the high blood pressure. But thankfully we have been home with her since January 3.

We finally got the results of her first PCR-ABL (the test for molecular remission). It was negative. Woo hoo! Nobody expected that. Of course we were praying for it. We are currently waiting on the results of a second PCR-ABL intended to check her status at the end of induction. We should know about this one early next week.

Sarah is getting TPN at home. That takes some of the pressure off us for her nutritional needs. She just wasn't able to eat enough to maintain her weight. We have also restarted her on Marinol to get some food in. For those who don't know the Marinol is a synthetic THC intended for medicinal use. The stuff has worked great for Sarah in the past and we are hoping it will work it's magic again to put on some weight before her second BMT.

Great news on the encephalopathy. Sarah has mostly recovered and she seems to be almost 100% herself again (except for the chemo crud).

We took Sarah outside to play in the snow and the Pink Playhouse. She and Christopher laughed and giggled as they were pulled around the yard in the sled. They also had a great time going in and out of the playhouse doors. It didn't take long to use up all her energy though and then she was ready to come in and warm up by the wood stove.

Ben and I are both somewhat stressed. I am having moments of extreme anxiety and moments of peace. I have been tempted to go ahead and fall apart but I think falling apart is over rated. No, don't need to do that. It helps knowing that we serve a loving God who is walking through this trial with us. We are again learning to live in the moment. To enjoy the sweetness of right now and sometimes endure the anxiety until it is replaced by another feeling. It also helps having your Mom close by, like in the same room. :-)

My Dad and sister left a couple of weeks ago but my Mom stayed with us. We are so glad she did since Sarah had to go back to the hospital right away. My Mom has managed all of our children wonderfully. I am so amazed at her endurance and ability to cope. Mom has been a blessing to us all and she has had a calming influence in our home. We are so thankful for her support and care. Thanks Mom.

-Susan

12-19-08: Good News and Not So Good News

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

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

12-14-08: Sarah's Mental State Improves

Sarah has been up on the pedi. floor since Thursday night and so far she hasn't had any more hypertensive events. That means her blood pressure has not gone too high and has been controlled by oral meds.

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.

We think she is improving though. Today she has managed to "stay with us" mentally and is talking more with less slurring. Walking has improved too. The Dasatinib was held all day Saturday and this morning. One of Sarah's oncologists suspects the Dasatinib is the culprit for her reduced mental capacity. She'll go back on the Dasatinib tonight. If the doctor is right, Sarah's mental capability will diminish again. Personally, I think its related to the high blood pressure incident from last Monday. Either way, it does not appear to be permanent and we are hopeful her mind will recover 100%.

Sarah is scheduled for a bone marrow biopsy this Wednesday to evaluate her remission state. Her blood is still free of Leukemic cells. We think Sarah will be released to outpatient visits within 1-2 days.

Take a look at our new van below. The ice storm in the North East got the most of us this year.

-Susan

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