We're back from Florida. Our trip was not "fun" but I still think it was a good choice. Now that we are home we are getting down to the serious business of grieving . We cleaned up Sarah's room today. Just tidying up not really going through her things. Ben and I worked on it together and we cried and then we cried some more. After a while Katie and Betsy came up and cried with us.
Thank you to every one who has sent cards, flowers, and notes of sympathy. The ones we have received with a hand written note have been particularly meaningful.
There will only be one or two more new posts to Sarah's Circle. Ben doesn't feel he can continue with it since she is no longer with us. We will post the slide show from her wake and that will be it. For those who wish to keep up with how our family is doing as we grieve and try to move on we will start a new blog.
If you are reading this and you feel like bringing dinner or washing a load of laundry..... I haven't been doing so great with much.
Saturday, May 30, 2009
We're back from Florida. Our trip was not "fun" but I still think it was a good choice. Now that we are home we are getting down to the serious business of grieving . We cleaned up Sarah's room today. Just tidying up not really going through her things. Ben and I worked on it together and we cried and then we cried some more. After a while Katie and Betsy came up and cried with us.
Friday, May 15, 2009
Not much to say except the ache in our hearts is unrelenting and our sorrow the deepest of sorrows. We miss Sarah so much. We miss her between us in our bed, we miss taking care of her, hearing her voice, getting those sweet little kisses and hugs. The sad list goes on.
The past year has been so hard on every one. It is definitely going to take a while to figure out how to live again. So before we start trying to think all of that through we decided to take a trip. We are taking all of the children down to Florida. Hopefully it will go well.
Wednesday, May 13, 2009
Here is a copy of Sarah's eulogy that was written by Ben and myself. Ben's sister Dauphne did a very nice job reading it for us.
Sarah Marie Jones
September 26, 2004
May 6, 2009
Sarah’s life was so short and yet it seemed that she lived a lifetime. From the time she was born, Sarah was the apple of every Jones’ eye. As an infant she would go from one set of arms to the next. There always seemed to be a line of sisters and brothers waiting their turn to cuddle her.
It was so nice when Sarah came along because we had learned so much about babies and parenting by rearing the older children. With her it seemed much easier since Sarah had two loving parents and six older siblings who adored her. Watching our big teenage boy tote her around on his shoulders and love on her just melted our hearts.
Sarah was so fair and pretty. Katie and Mommy loved to dress her in little girlie outfits – pretty pink dresses with matching hats. We put dresses on her all the time. She was a wonderful baby always smiling.
Sarah was so smart. We taught her sign language. By the time she was ten months old, she had mastered many signs. She could sign nurse, mama, eat, and drink, along with elephant and a few more.
When she learned to talk, Sarah used to tug on Mommy’s clothes and say "sure", in her little sing song voice, because that is what Mommy used to say to her when she would ask to nurse.
Sarah loved to play with baby dolls. She loved to have tea parties. Just before Sarah got sick last year we had a tea party with the Reif children. Sarah and Shoshawna Reif (who were both 3 at the time) were so funny as they giggled and laughed about spoonful after spoonful of sugar going into their tea.
Then she got sick. Sarah was so tired that she started napping twice a day and our lives changed forever.
We were shattered the day Sarah was diagnosed with leukemia last May. When her pediatrician called that Sunday evening and told us she had leukemia, we didn’t even know what it was. What would happen next? Would we be told our daughter was going to be okay? Would we be told our daughter was going to die?
We learned that Sarah had a low likelihood of survival. All children are brought into this world for purposes known only to God. Although grief stricken, we knew a big part of God’s purpose for Sarah coming into our lives was unfolding. It was then that God began working through precious Sarah to teach us things we could never fully know otherwise.
Sarah inspired us. She never felt sorry for herself, and she never moped. She always insisted on caring for herself whenever possible. Sarah would help clean and remove her bandages and flush her "tubies". She made it easier for the nurses to change her pull-ups by raising her bum for them during hospital stays. She helped open the packaging for her supplies.
We were moved by Sarah’s warmth and her responses to the care that we and others provided. We can still hear her say "Daddy, I love you" and "Mommy, I love you" so clearly. These words were not only reserved for her mommy and daddy, but also spoken to many others who cared for her. Lying on her bed, Sarah would reach out to give a hug and kiss on the cheek whenever it was time to say goodbye.
The treatments Sarah received made her feel very sick. Some of them took a few days before she felt like getting out of bed; some took several weeks. More often than not though, Sarah had fun at the hospitals and in between treatments at home. During hospital stays, she would often ride in a little push-around car with a musical wand playing music while she did a little dance. Other parents at the hospital said it brightened their day when Sarah drove by their child’s room with her little car and musical wand playing.
Her most favorite thing to do was swing. When Sarah was at home, we took her out to swing whenever possible. On one of her last few days in this world, Sarah said she wanted to swing. Her nurse that day, Danielle, helped us drag Sarah’s IV pole through the gravel to the swing-set, and she swung.
Sarah taught us so many things. We learned that we have the capacity to channel God’s limitless love and patience through us. Over the last 12 months, God worked through Sarah teaching us things that we only thought we knew. Things we might not learn in an entire lifetime otherwise. We now know the meaning of grief and joy, despair and hope, fear and courage, pain, patience, love and life. Our understanding was sketchy before, but now we’ve seen a painting.
Sarah’s life was a gift we willingly accepted, Sarah’s life with cancer was a gift too but not one we wanted to accept. We now know that cancer was a part of Sarah’s life as much as it was a part of her death. Many times before Sarah died, we discussed how it was like someone else held her hand alongside ours. We were frightened we would have to let go and Sarah would be taken from us, but at the same time comforted knowing it was Jesus that held her hand. We did not lose Sarah. She waits for us to join her at home.
We will always be grateful to God for all of what Sarah was and is and wait for the day we will walk by her side again.
We love you Sarah
Friday, May 8, 2009
Calling hours will be at Lamberts Funeral Home on Elm St. Sunday, May 10, from 3-6pm.
Sarah's memorial service will Monday, May 11, 10 am at the Presbyterian Church in Bedford.
We welcome all of our family, friends, and Sarah's caregivers to attend.
Wednesday, May 6, 2009
Sarah went to heaven at 3:15 this morning. She died peacefully in her sleep. During the night her breathing became slower and slower until she just stopped. Ben and I stayed up late into the night, in her bed cuddling close, telling her we love her, until we fell asleep. She knew we were with her and she was comfortable. We are very thankful to God that she went this way.
We will have information about Sarah's memorial service and wake tomorrow. I'll post that on the blog and send out an email.
While our hearts are heavy with missing our precious little girl we have faith and hope that we will be with her again in heaven.
Susan and Ben
Tuesday, May 5, 2009
Wednesday, April 29, 2009
Sarah is still in the hospital being treated for pneumonia. She is taking four different IV medications for the pneumonia. All the IV meds are causing fluid to be retained in her lungs making it difficult for her to maintain good oxygen saturation and keeping her from breathing comfortably.
Sarah's condition has been degrading for the last few days. The doctors believe she is unlikely to survive the pneumonia. They are still actively treating her pneumonia and trying to reduce her fluid retention, but they are not giving Sarah a good prognosis.
Pneumonia can be hard and even deadly for healthy people let alone a four year old girl having gone through what Sarah has. We know the doctors could be right about this complication for Sarah, but continue to pray and have hope for her Sarah's recovery. This is a very hard time for Sarah and our family. Sarah has been working very hard to survive especially as of late and we do not know how much her little body can take. However, the little girl inside her little body is still very strong and she continues to insist on taking care of herself as much as she can. We love her very much.
Sarah's white blood cell count and associated blast count remains in check and at a low level (thanks be to God). We have not made any progress regarding the clinical trial as Sarah is ineligible with her current infection.
Please pray for Sarah's recovery from the pneumonia and fluid retention as well as continue recovery from her cancer.
Monday, April 27, 2009
Sarah is in the hospital with pneumonia. She was admitted last Wednesday due to high billirubin and continued fevers.
The doctors put her on antibiotics and antifungals right away to try and clear it up. The infection is in her left lung and we're told its pretty bad. We are not seeing big improvements yet, but Sarah is also not getting any worse either. We are waiting and praying.
We're all pretty tired, but probably not as wiped out as Sarah.
We'll try and provide a more thorough update Monday or Tuesday.
Sunday, April 19, 2009
Sarah has been home for one week. Last week was tough.
Sarah's meds are scheduled around the clock (4 hours) to keep her nausea and fever at bay, which translates into little sleep for us. We did start her on some steroids to help control the fever; Fever that was getting really high (104-105F) and making her uncomfortable. Additional antibiotics were added to Sarah's meds to address possible infection as the source for her continued fever. The antibiotics do not appear to be addressing the fever source even after being on it for 4 days.
Sarah had respiratory distress immediately following her chemotherapy several weeks ago. The doctors went through several narcotics to ease her effort breathing and respiratory rate. She came home on methadone and a fair amount of ativan to help her relax. She is able to breath comfortably, but is fairly lethargic. Just like the fever, the source for the respiratory distress is not clear.
Sarah's oncology team tells us that often these symptoms present themselves in this manner at end stage leukemia but the symptoms may be due to a few other causes. Sarah's primary oncologist calls our home every day to check on her status and discuss next steps.
Sarah had outpatient chemotherapy Friday and came home. Her WBC and blast count remains very low. Hopefully, the approach of giving lower dose chemo before her counts go up will work for Sarah. Her blood will be checked again on Monday.
No new word on the clinical trial date. The doctors are working hard towards getting her into the trial. We are still looking at mid-May as far as we know. And as long as Sarah can make it.
Susan's sister, Sandra, is here to help out. She is a big help and has managed get all the laundry washed up on top of having a little fun with the children. We are very thankful that she doesn't have a career and was free to come back.
Please keep Sarah in your prayers specifically regarding the source of her fever, respiratory distress and blast count.
-Susan and Ben
Sunday, April 12, 2009
We brought Sarah home from the hospital yesterday afternoon. This time the decision to bring her home was a tough one. Sarah is still having fevers and sometimes at night her oxygen saturation's drop down to the high 80's. We are very concerned that she has an infection somewhere that the docs cannot find. Sarah has had numerous x-rays and CAT scans that have turned up nothing.
Ben and I waited until the last minute to tell her she was leaving the hospital just in case something happened and she had to stay. Before being discharged Sarah was beefed up with platelets, and a dose each of Ativan, and Benadryl for the ride home. Amazingly, she made it the whole way home without throwing up.
Arriving home from the hospital is always very busy and a little stressful. This time it was a little easier because we had separate cars. Ben stopped by the pharmacy while Sarah, Asa and I went ahead to the house. As soon as Ben got home we wrote up up Sarah's new med schedule and started with them.
Sarah is still sleeping with us at night so that we can keep a close watch on her. I wasn't sure we were going to get any sleep last night because Ben kept asking me to wake up and listen to Sarah breathe. We are only scheduled to wake up once (2 am) for meds. Though, last night went well.
The clinical trial looks like it is going to happen later rather than sooner; They won't be ready for Sarah until the middle of May. No one is sure Sarah will be able to wait that long. We are trusting God to work out these details. But still doing our share of worrying.
St. Judes is working with Sarah's Dartmouth Oncologists to manage her leukemia prior to her slot opening. Since Sarah's cancer is still responding to chemotherapy (but returning shortly after treatment), she'll be given more frequent smaller (less physically stressing) doses of chemo while her blast count is low. In contrast, the approach up until now has been to give her more intense chemo treatment and wait as long as possible to repeat. Hopefully, the new approach will prove effective and easier on her little body.
Sarah was in God's hands even before her diagnosis on May, 4 2008, but we feel it every minute of every day lately. We are grateful she is still with us and pray for God's mercy, strength, comfort and continued hope.
Please pray specifically for Sarah's fever and underlying issue to correct and the alternate chemotherapy treatment to prove effective for Sarah.
-Susan and Ben
Monday, April 6, 2009
Things are looking better. Sarah is off the supplemental oxygen. Her doctor came in this morning and said we could take her off and watch how she does. She is doing great. Her o2 is staying around 95% during sleep. Sarah is still on a narcotics. Although we did have to switch her from morphine to hydro-morphone because she got a very itchy red rash all over her trunk.
Sarah's blast count in her blood is down to zero. We are pretty glad about that but we would be REALLY glad if the blasts didn't come back when her marrow recovers. One day at a time is the only way to handle this right now.
We seem to be having some communications problems with the doctors about Sarah going to that clinical trial. From our discussion with Sarah's oncologist this morning it sounded like they didn't know we absolutely wanted to take her. We are trying to sort that out today. Hopefully she hasn't lost her place in line.
Christopher and Asa have drippy noses. I am not too thrilled about passing around a cold. To avoid that happening Christopher is going home today. Asa and Sarah will just have to keep their distance.
For some reason unknown to us God has carried Sarah through many dangerous storms. And after everything that we have been through I don't have enough energy to get all worked up and scared about things. We'll just PRAY and wait to see how things go.
Susan and Ben
Saturday, April 4, 2009
Sarah's PICC line was installed in her left arm and she started chemo Thursday.
Yesterday the oncologist told us Sarah's kidneys looked like they were getting ready to fail after the first dose of five of chemo. Sarah's fluid intake was increased in an effort to protect them and we moved forward with dose two. Sarah's heart was also in jeopardy since her potassium had dropped and the added fluids would potentially drop her potassium more. Potassium supplements were added to offset this. Thanks to many prayers and God's continued mercy, the second dose of chemo didn't shut any of her organs down and her electrolytes were within acceptable values today.
More goods news, her WBC (including blasts) dropped from 26k to 18k after the first dose of chemo and from 18k to 1k after the second dose. Were were hoping for a response like this and hope to see the her cancer burden drop further tomorrow. We did stop the chemo after day 2 due to her adverse reactions. We'll see what tomorrow holds for us tomorrow.
We are so glad to see this day end. Today has been one of the worst days we have had since the beginning of our cancer journey. Ben says the stress has aged him at least five years. It all started at around 6 am. Sarah developed a 104.2F fever accompanied by nausea and extreme physical discomfort. She spent the entire morning thrashing about and crying "Mama" and yet she was so uncomfortable we couldn't touch her. Her fever broke through the early morning dose of Tylenol but the second dose did finally kick in after about 2 hours. Sarah's breathing was very labored and her heart rate was at 200BPM at one point. The oncologist told us Sarah would probably not be able to breathe on her own by the end of the day and that she thought Sarah was dying.
To make Sarah more comfortable we increased her Ativan and gave her a PCA with morphine. The Ativan was a good move and really helped get Sarah over her nausea and ease some of the fever induced discomfort. We did give her one mg. of morphine and that helped her pain but we are now second guessing the morphine. Sarah was already having difficulty breathing and morphine can suppress respiratory function. She did actually scare us by skipping a few breathes after getting the morphine. We are hoping to not use the morphine.
But at around noon Sarah started to turn around. Her respiratory rate and heart rate both slowed closer to normal. Her fever dropped and has not gone high again. She seemed to feel and act much better. She even played with a new doll for a little while. Since Sarah has improved so much we are going to try reducing her Ativan.
Please pray that Sarah's respiratory issues clear up and that her fevers clear. Also pray that her blast burden remains low, her organs continue to function properly and she doesn't get another infection allowing her to enter the clinical trial.
-Susan and Ben
Wednesday, April 1, 2009
Sunday, March 29, 2009
We finally managed to make a decision on the clinical trial facility. St. Jude in Memphis was the winner. Our main reason for choosing this hospital was because it is closer to our families. The housing issues have also been resolved. Habitat For Hope is going to house us and for no cost. We didn't even know about Habitat For Hope but found them through a friend of a friend.
Tonight as we were preparing to sleep Ben and I realized that Sarah had a high fever. Thankfully she was responsive and alert. Ben and Sarah left for the hospital about ten minutes ago. It was hard for me to let him take her but one of us needed to be here with the rest of the children. We should have called our emergency contacts but I didn't even think of it until just now. So if you are on that list I may be calling you in the morning.
A very tired and worried,
Friday, March 27, 2009
Sarah continues to do great despite low counts. Her marrow appears to be recovering although very s-l-o-w-l-y. The last couple of days she has been full of energy and even a little naughty. Even as I type this up Sarah and Christopher are outside playing in the Pink Playhouse.
Tuesday, March 24, 2009
Sarah went into the hospital today for red blood cells and platelets. It was a long day. We left the house at 8:30am and got home at 8:30pm. Her WBC’s were at 0.20 and her blast count is 6%. We think she is all set at least until Friday.
My mother, sister and nephew flew home today. They were visiting us this past week. Sarah enjoyed the time she spent with them reading and playing. Sarah has felt pretty good the last few days.
Susan and I on the other hand have been trying to keep our stress levels in check. We have been waiting to hear if Sarah qualifies for a clinical trial the oncologists are investigating for us. The oncology team told us her blood checked positive for a marker (CD22) needed for the study and was added to the list of participants. We hear that it will take about 1 month before Sarah will visit the facility conducting the clinical trial. We will learn more over the next couple of weeks. Sarah may need one more round of chemotherapy before beginning the study to keep her blast count low. We also need to firm up which facility to take Sarah to for the study. It’s either the National Cancer Institute (NCI) in Maryland or St. Judes Hospital in Tennessee. Either facility will provide excellent care and are part of the same study, so it’s more of a logistics decision.
We are very grateful that Sarah feels OK and for God opening the door for additional treatment options for Sarah. Our objective for Sarah is still to cure her of leukemia. We see this as a possible avenue for her 2nd BMT and will be discussing this with Dana-Farber in more detail over the next few days.
Please continue to pray for Sarah’s recovery and gratitude for what he has done for her and in our lives.
Saturday, March 21, 2009
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.
PS Sarah has been having lots of fun playing with her siblings, her cousin Philip, and her Leapster.
Thursday, March 19, 2009
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.
Monday, March 16, 2009
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).
Thursday, March 12, 2009
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.
Monday, March 9, 2009
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, 2009
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.
Thursday, March 5, 2009
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).
Tuesday, March 3, 2009
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.
Sunday, March 1, 2009
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.
Wednesday, February 25, 2009
Friday, February 20, 2009
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.
Tuesday, February 17, 2009
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.
Friday, February 13, 2009
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.
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!
Wednesday, February 11, 2009
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.
Tuesday, February 10, 2009
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.
Friday, February 6, 2009
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.
Wednesday, February 4, 2009
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.
Saturday, January 31, 2009
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?".
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.
Friday, January 23, 2009
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.
Friday, January 16, 2009
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.