The last couple of days have gone well for Sarah and the rest of us. The VNA came on Friday morning and the lab work showed that all of Sarah's counts were down. Her WBC's were at 0.18 and the blasts were 10% of that. We are glad the blasts came down but still mindful that we need to be watchful for infection with such a low white count. The VNA will be back early Monday morning for more labs and most likely she will go to the hospital to get some red cells and platelets. I almost forgot to say that Sarah's fever is gone. yay. She is on some heavy lifting antibiotics.

I have worked out my clinical trial issues and come to a decision as to what I am willing to do. If Sarah does qualify I will definitely agree to take her. Which brings up a few other thoughts. The trial we are thinking of is taking place in Maryland and Tennessee. We are not sure which hospital we would go to yet, but be assured wherever it is, we will all go. Neither of us are willing to let the other parent take Sarah hours away or to another state to most likely die without her family. Sarah's need for her siblings became very apparent to us during her BMT and most recently the last few months that she has spent in the hospital. Without her siblings she became very depressed and has sometimes cried, "I need more people", and "I need my family". No, wherever she goes Sarah will have all of her "people" with her. At this point, I can not imagine us making any other choice. We don't know how we are going to make this happen logistically and financially but we have decided in our hearts that if it comes to a trial we will.

Most people have no idea what it is like to have a serious illness like cancer take over your life(including us before). It is all consuming leaving little time for anything else. My good friend Lynn has been doing most of the Sam's club runs for us and thankfully all our children help with running the house. Even so it can be very difficult at times to get our brains to think anything not cancer related, especially now. So normal every day things seem more difficult to accomplish.

Thank you to all of you who sent us your love and messages. I knew you were out there. We were overwhelmed by your love and compassion and so blessed and encouraged to hear from you. Keep em coming.

Susan

PS Sarah has been having lots of fun playing with her siblings, her cousin Philip, and her Leapster.

Clinical Trial?

We brought Sarah home from the hospital yesterday afternoon. She was so adorable as we were leaving, hugging and kissing all of her nurses goodbye. Sarah is a precious little girl and has won many hearts with her sweet disposition. Bringing her home was bitterweet. We want so much for her to be at home but at home and well. Sarah came home with a fever and blasts in her blood. The fevers are worrisome in a big way because her white cell count is so low; for example, she is at 0.3. And the blasts are... just bad!

We called to someone at the NIH in Maryland about a clinical trial and had Sarah's blood sent to them to see if she would qualify. We should know by Monday. It is very hard to accept that modern medicine has nothing more to offer Sarah other than a Phase 1 clinical trial. Not a place you want to be with your precious baby. Ben definitely wants to take Sarah to a clinical trial if she qualifies. Although, it goes against everything inside of me to accept an end to Sarah's treatment, I am not sure I can agree to a clinical trial. On the flip side of that, I desperately want for her to be well and would travel to the ends of the earth if I knew we could cure her. We'll see how God works things out for her. Praying on this.

If Sarah does qualify for a clinical trial, and we do move forward with that, and if by some miracle she is able to go for another BMT we are going to set up a charitable fund of some sort to help these expenses. A number of people have asked if they can help us in this way and up until now we haven't needed it, but if Sarah is able to receive continued treatment we are definitely going to.

Sarah's VNA will be coming tomorrow morning to draw labs. If Sarah needs to be transfused we'll be at Dartmouth most of the afternoon.

I know that Sarah's Circle gets a lot of hits every day but we don't know who is reading the updates. It would really encourage us if you would leave us a note and let us know you are praying or thinking of us.

Susan

3-16-09: High Dose Methotrexate Fails

The chemotherapy administered Thursday evening through Friday evening did not reduce Sarah's blast percentage in her white blood cells.

She went in at 73% blast and is currently at 86% blast. The treatment did lower her total white blood cell count which reduces the urgency of follow on treatment. Susan and I are working with the oncology team to determine what to do next.

The options being investigated:
-Clinical trials Sarah might qualify for. These would be phase 1 clinical trials. Sarah would need to meet specific requirements to participate in a clinical trial and be off all chemotherapy for several weeks before beginning this option.
-One more targeted drug (Nilotinib). This option would essentially be close to a stab in the dark since safe and effective pediatric dosages have not been investigated. We'd be using it off-label for Sarah.
-Control of the leukemia for as long as possible with chemotherapy. To some extent that's what we've been doing since her diagnosis as none of the treatments have yielded a durable remission yet. Still something we would not like to consider as the primary objective.

We think Sarah will be released from the hospital Tuesday or Wednesday. I think we'll need to make a decision sometime this week regarding Sarah's next treatment. We do not like any of the doors in front of us and are praying God opens the right one for Sarah. It's very difficult but we are remaining hopeful. We also have faith that God is doing good in Sarah and our lives. Please keep Sarah in your prayers.

Sarah had a nice time at the park last Sunday playing with her family. I attached a slide show below (it's a little big).

-Ben

3-12-09: Dasatinib Treatment Fails

Sarah has returned to the hospital today. The visiting nurse came to our house Wednesday to draw Sarah's blood for CBC. Sarah had 45% blast count in her blood (45% of the white blood cells where leukemic). Sarah's blast count was 73% when she got to the hospital today for chemotherapy. The doctors don't think the Dasatinib was working for her. I guess we'd have to agree.

The plan as of last Saturday was to have Sarah return mid-week for additional chemotherapy. We just didn't plan on doing it with a high blast count. The chemotherapy she is getting is high dose methotrexate. It's administered over 24 hours. We are praying she tolerates the treatment as well as she has previous chemo treatments and that the blasts do not return when her blood counts begin to rise again.

We talked with the bone marrow director at Dana Farber tonight to see what she'd require for Sarah to move into DLI treatment. The DLI might buy some time for Sarah to prep for a 2nd BMT. Basically, Sarah needs get to <10% class="blsp-spelling-error" id="SPELLING_ERROR_7">DLI at Dana Farber. The BMT director also mentioned 2 clinical trials Sarah might qualify for, one ongoing in Washington and another at Dana Farber in about 1 month. We'll be discussing the clinical trials with Sarah's oncology team tomorrow. One additional option we will be considering is another new targeted drug called Nilotinib. It's similar to Imatinib and Dasatinib, but each one can have a greater or lesser impact on specific mutations of Sarah's type of cancer.

Three of our children are staying with another family we are friends with. The rest of our children are with us at the hospital. We are staying at Davids House which provides housing, food, laundry, etc. for families of children in the hospital. Davids House is one parking lot away from the hospital.

We know Sarah's treatment options are dwindling. It's not a good feeling. It took a bit of searching to renew our hope, but God is continuing to provide that for us. We'll continue to pray and listen and hopefully hear what God is asking for us to do next.
-Ben

Sarah has been doing pretty well since she came home. Her nausea seems controlled and the diarrhea is becoming less frequent. The weekend was pleasant. Yesterday we took full advantage of the sun and warmer temps and went to the park. Sarah had a great time and played and laughed like a normal 4 year old until she had some diarrhea and we had to leave because we didn't think ahead enough to bring her extra clothes.

The visiting nurse came this morning and drew Sarah's blood. All counts looked pretty good but she did have an increase in her blasts. The blast count went from 1% to 2%. Not a big increase but it did double. We are currently doubling her Dasatinib from 40mg to 80mg per day.

Sarah's VNA will be back on Weds to draw more labs.

Please pray that those blasts will go back down to 0% and that Sarah will tolerate the increased Dasatinib well.

Please also pray for Sarah's friend Cameron who is also battling Leukemia. Cameron is in the hospital today because of a fever and neutropenia. He is also starting the radiation part of his treatment (which can be scary because of the need to be restrained in a mask that gets screwed down !) Please pray for him to have relief from anxiety and for his fever to turn out to be nothing.

Saturday, March 7

We brought Sarah home from the hospital today. She has been without a fever for several days and the nausea is nearly gone. Her labs this morning did show 1% blasts in her blood. Yesterday she was at 0% blasts. We have decided not to panic about this right now and just continue to pray.

Next week we will take Sarah back up to the hospital for more chemotherapy. This time we'll be giving her high dose methotrexate. The methotrexate was Ben's idea. After looking through Sarah's labs over the last few months and graphing her progress he began to wonder if it was the methotrexate that was causing the big drops in the blast count.

Our dear friend Mildred left for home today. We are very grateful for her help over the past two weeks. We have had a few ideas about who might come next but so far nothing has worked out. It really feels like our support has started to dry up. That may not be entirely real but it sure does feel like it. God has provided the support we need next week through our dear friends the Camuso family. I have faith he will continue to do the same the following weeks on his terms and not ours.
-Susan

3-05-09: Blood Counts Look Good

No blasts were found in Sarah's blood today. She dropped from 5% Tuesday to 2% Wednesday and is at 0% today. We're grateful to God and remain hopeful for Sarah's recovery.

She may be experiencing bone marrow recovery as her WBC count has been creeping upward as her blast count has been creeping downward. There is a small increase in her red blood cells too. No platelets yet though. No Neutrophils yet either.

Sarah has still been barfing but noticeably less over the last 2 days. No fevers over the last 2 days either. The mouth sores she has seem to be improving too.

Sarah has been taking full dose Dasatinib since Saturday, but Susan and I are anxious for her to begin additional chemotherapy. We do not want another short lived remission like December. We plan to discuss continued treatment with Dr. Van Hoff Friday.

Sarah's bone marrow likely still has blasts since her blood just cleared today. The doctors will need to do a bone marrow aspiration to know what's going on in her bone marrow.

Mildred Rembert (up from Alabama) has been staying with us for the past 2 weeks. Mildred was our neighbor when we lived in Alabama years ago. She will be returning home Saturday. Mildred has been a real blessing to our family watching most of the children while Susan and I stay tight with the doctors and of course Sarah. We will always appreciate what she has done for our family and will miss her support and kindness.

Thanks for your prayers (past and continued).
-Ben

3-03-09: Roller Coaster Week

Sarah has been having a roller coaster of a week. She went home Friday (w/Neutropenia) and managed to stay fever free until this morning @ 4:30AM. Dr. Van Hoff told us to bring her in with a measured fever of 102.7F. She'll be in the hospital until Thursday, maybe longer.

The VNA (home visit nurse) came to our house Sunday to draw blood and check Sarah's blood counts. She needed platelet and red blood cell transfusions so we went up to Dartmouth. More blood work at Dartmouth showed a cancer blast reduction in her blood from 45% (Friday) to 8% (Sunday). Todays labs showed another decrease from 8% to 5%. We were really thankful to God for that answer to our prayers.

Sarah's doctors at Dana-Farber are discussing Donor Leukocyte Infusion (DLI) for Sarah if her overall blast count (blood and bone marrow) can be reduced low enough. I believe the DLI would be used as part of a preparative treatment for a second Bone Marrow Transplant (BMT).

Sarah has been feeling lower than her normal self over the last several days. She has been "barfing" (Sarah's terminology) many times during the day for the last several days and her energy level is fairly low too. She does play and interact with her family and the doctors/nurses in between low points.

Pray that she'll start feeling better, have her energy return and reach remission again.

-Ben

3-01-09: Waiting for Bloodwork

Sarah was released from the hospital Friday. Her blast count in her had stopped declining Thursday and actually rose slightly Friday.

She received L-Aspariginase, Methotrexate and Dasatinib Thursday night. Sarah is going to have her blood checked again today (Sunday).

We are hopeful her blood will be free of blasts from the blood work today. Please pray with us for this.

Thanks,
Ben

2-25-09: Blast Count is Dropping

Sarah hugs Asa at the hospital

Sarah began the alternate chemo therapy approach on Saturday. After 4 days of treatment the blast percentage in her blood has gone down. The doctors are pleased she is responding to the treatment.

Sarah recieved one dose of Vincristine earlier this week. She is going to receive her last steroid (Dexamethasone) dose tomorrow. She will also be receiving oral Methotrexate and L-Asparaginase tomorrow. The current plan is to add on Dasatinib a couple of days after the Dexamethasone ends. The doctors are targeting releasing Sarah Saturday.

The treatment she is on is a slightly modified version of the treatment that got Sarah into remission in December. The biggest change is delaying the Dasatinib until the Dexamethasone ends. The doctors are watching her blood pressure closely and medicating her for hypertension from the beginning of treatment this time. Sarah's encephalopathy in December immediately followed a hypertension event during a blood transfusion. Most of the drugs Sarah took in December and now can cause encephalopathy too.

Sarah's doctors feel they have a handle on keeping her stable during her current drug combination. We feel they do too, but are still quite uneasy about the encephalopathy. Frankly, I don't want to learn what different chemotherapy drugs do, how they work or the likely and unlikely side effects. Learning these things is not an encouraging process. But, I'm her father and I'll do whatever is required to protect and provide for her. The biggest single thing Susan and I can do for her is to pray for her, but learning about treatment options and advocating for her is essential.

-Ben

Jacob recieves Sarah's curious George for his 16th birthday Feb. 14.

2-20-09: Flag Fails

Dr. Chaffee told Susan and me that the FLAG chemo treatment failed today.

Sarah's white blood cell count had been rising slightly over the last few days, still well below normal values. Not unexpected or alarming until blasts were detected today. Dr. Chaffee said about half of the blasts were leukemic after detailed review of the blasts. Sarah's blood counts (WBC, RBC and Platelets) have not recovered as of today.

As you know, Susan and I had hoped the FLAG would get Sarah to a stable remission and into her 2nd BMT some months later. Another treatment behind us, but not the right one...

So what are we going to do next? We are going to continue to have hope for our daughters recovery. We are going to continue fighting for our daughters life. We are going to continue to have faith in Gods goodness and mercy. We are going to continue praying.

Dr. Chaffee discussed revisiting the treatment that got Sarah to remission in December albeit not a lasting remission. I have a tendency to agree. Susan and I will pray and then make some decision tomorrow and move forward.

Sarah is a wonderful child. She is full of energy and life (even now) sharing it with everyone, not just her immediate family. We are all heartened by the gift of her presence and love. She tells Susan, me and the other children "I love you" out of the blue for no apparent reason and without reservation. In fact, I think she has told me "I love you" more than any single other person on earth (except for my amazing wife). I guess when you demonstrate love for someone with your whole heart, it comes back to you.

Thank you for your prayers over the past year and thank you for those in your heart that are continuing for Sarah.

-Ben

2-17-09: Fever and Back to the Hospital

Sarah developed a fever of ~101.7F tonight. She was nursing a low level fever during the day and made it to the >100.4F value required for another hospital stay. The chemo she's been on (FLAG) really knocked her blood counts down including her bodies immune system. The doctors told us to expect her to return to the hospital with a fever sometime this week. They were spot-on.

Sarah has had chemo-induced fevers before resulting in 3-4 days in the hospital. Generally, the cause of the fevers isn't determined and she heads home. We are hopeful that's the case this time too. Susan, Katie, Asa and Sarah headed up to Dartmouth tonight around 9:30pm. I will replace Susan Thursday and stay at the hospital until Sunday unless Sarah is released before Sunday.

I know a lot of folks have challenges greater than ours, but I sure am tired. Maybe I should start weight training again. It does wonders for fatigue and mental exhaustion. Something to think about while I'm eating all that delicious hospital food this weekend.

Continue to keep Sarah in your prayers.
-Ben

Blood Counts Bottom Out

So we arrived at the clinic about 25 minutes late.

The first thing Sarah had done at the clinic was have her vitals checked: blood pressure, temp, weight, and height. All of those were good. Then the nurse came in to draw blood from the "tubies". After that one of the oncologist came in the check Sarah out and discuss how she has been at home. (Although Sarah was playing happily she did not seem to feel as good today. She was very tired and her skin looked a little pale.) Then we waited for the blood work to come back from the lab. And we waited. And we waited while Sarah had Pentamidine, an IV PCP prophylaxis. (It's supposed to prevent some kind of lung infection.) We waited for Sarah's platelets to come up, from wherever they come up from in the hospital. Once the platelets came the transfusion took about 2 hours.

While all this waiting was going on the boys and I did some mathematics, watched a video, and ate some snacks. And Asa decided to get a fever. No other symptoms just a fever.....so far. Bad news especially with Sarah's counts being so low.

Speaking of counts here are Sarah's counts as of today.

WBC 0.2
HGB 9.5
PLATELET 19
ANC .05

Dr. Chaffee gave me a copy and a graph of all the BCR-ABL tests that Sarah has had done since she was first diagnosed in May. It's weird how we can get her into remission, twice so far, but that CANCER keeps coming back. Just another reminder that the odds are definitely not in Sarah's favor.

One last note. We restarted Sarah on the Marinol tonight and were so happy to see her eat two small slices of pizza. That pizza was the most food she's eaten in a week. Thank's Marinol!

Done with FLAG

Home again.....but for how long? Sarah finished with the FLAG last night, so today, she was discharged from the hospital. The chemo is definitely dropping her blood counts quickly. On 2/08 her WBC's (white blood cells) were 46.1 and today they were 3.9, PLATELETS 119 down to 50, and her HEMOGLOBIN is 10.1. The hemoglobin is good because a couple of days ago she had a transfusion of red blood cells. Counts are dropping and that means that soon Sarah will be neutropenic, fever and neutropenia = back to the hospital. With the way her blood counts look today we are expecting that to happen sometime early next week. The worrisome thing about this is that many people die from infection after getting FLAG.


Little Sarah was so happy to leave the hospital today, she was adorable as we left, saying goodbye to everyone and dancing down the hallway. She was even happier to come home to her family. The afternoon was filled with play, sometimes noisy, rowdy, running, screaming play. It was great! Sarah and Christopher had fun competing for the best spot on Grandmas lap.

Have you ever given blood? Friday we will be heading to the clinic for a scheduled platelet transfusion. Sarah will be surviving on transfusions for a while; so if Sarah inspires anyone to become a blood donor GO FOR IT. Same goes for signing up to be a bone marrow donor. It is so easy. Click here to see how.

The numbers are not in Sarah’s favor. I think they are actually way below the ten- percent mark, probably closer to one- percent. But our hope for Sarah is not based on numbers. No, we are not in denial and we do realize that our doctors got these numbers from research combined with their many years of experience. We know that God CAN make her well again. So we are going to continue asking. That is where our hope is and we are not giving up.

FLAG

This is going to be short.

Yes, the cancer came back again. Can you believe!

We decided to try yet again to get Sarah into remission. The only option for trying to reach remission #3 was some HARDCORE CHEMO called FLAG. Which is a combination of chemo drugs and growth hormone to counteract the drugs. Also steroid eye drops to protect little eyes from conjunctivitis caused by the chemo. They expect this stuff to "knock the socks off" Sarah's counts. We checked her into the hospital on Friday evening and started the FLAG on Saturday.

So far she is doing really well. Just a little nausea, fever and some bone pain. That was all yesterday. Today Sarah has had a great day and played with her siblings most of the afternoon. Her WBC has come down from 36,ooo to around 16,000.

Ben and I continue to remain hopeful that Sarah will reach remission and be free of leukemia. Even though the Oncologist have assured us that that goal is a "high bar". Please continue to pray for that.

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.