Day +68: Proactive Relapse Treatment

Sarah is doing super this week. She hasn't put on any weight this week, but she's eating noticeably more food. Still not much fluid intact so she's still on overnight hydration via pump. Susan talked with Dr. Wang (Sarah's Dana Farber Fellow) about dropping her overnight fluid intake by half. Apparently, Sarah's liver tests are coming back good. She is playing more and interacting with us more and more. She is not at all like she was before her diagnosis, but it's great to see her recovering and feeling so much better after the BMT. Spending time with her during her BMT low period puts a new perspective on a lot of things.

Susan and I both took Sarah to her weekly Tuesday visit to Dana-Farber yesterday. The medical team discussed some options with us regarding relapse mitigation and prevention. Primary on the table was reducing Sarah's likelihood of relapse. PH+ children have a fairly high relapse rate after BMT's. There are not any widely accepted prophylactic treatments for relapse of PH+ children after BMT's. That said, one option that has shown promise and some level of efficacy is the use of Gleevec (Imatinib) as a prophylactic for relapse. The doctors at Dana-Farber and Dartmouth-Hitchcock are willing to support this approach if Susan and I feel this would be best for Sarah. I called the principal investigator of the Gleevec prophylactic study today and after talking with Susan decided we would take this approach.

A relapse of Sarah's cancer would set off a chain of events that are more difficult than Susan and I want to think about. To paraphrase something I've heard said, "My fields are plowed and seeded and now I'll wait for God to provide the rain".

With Sarah doing so well, I feel selfish saying it, but the stress has been kind of high in our home since she has returned from the BMT. Susan and I both recognize this and I think that's half the battle of dealing with the stress. I know that Susan is trying and that encourages me to do the same. Please pray that we are able to support each other and our children too.

-Ben
1 Chronicles 28:20

Day +60: Watching and Waiting

Ice Cold Beach




Generally speaking, Sarah is doing good. She has not had any fevers for over 1 week and she is up and around now. She is eating (small amounts) and drinking fluids on her own (again, small amounts). Sarah still gets ~700cc of fluids overnight via her central line. The overnight fluids are there to insure her kidneys are not being damaged from the Cyclosporine. Once the doctors are confident her kidneys are are going to tolerate the Cyclosporine, then the overnight fluids will drop off. It's honestly a cakewalk to manage the overnight fluids relative to everything we've been asked to do up till know.

The Dana Farber doctors said we could take Sarah to the beach/ocean as long as we were not near any small groups of people and Sarah didn't swim in the water. We'll we did take her to the ocean and the kids had a great time. Since it was late summer, no one (absolutely no one) was there. Sarah did not do any swimming in the frigid New England Atlantic water, but that did not stop most of the other children. It's a high price (ice water) for fun, but those little ones are willing to pay it.

As of this week, Sarah is now going to Dana Farber every Tuesday for outpatient visits. If her Cyclosporine level is too high or too low then her medication level is adjusted and she goes in on Fridays for a recheck. The folks at Dana Farber did not contact us this afternoon with the status of her Cyclosporine level, so we don't know if we are taking Sarah in this Friday or not. I'm sure we will know tomorrow. Still more of the "make plans-break plans" approach to life for us. We make the best of it, like everybody else I suppose.

Susan and I have questioned Sarah's medical team regarding monitoring for relapse, relapse prevention and follow on treatment if relapse occurs. We began this questioning just before Sarah was released from the BMT ward at Boston Children's Hospital. We were not satisfied with the initial responses we were getting from our team, so we kept asking. Sarah has been through some pretty intense procedures to get rid of her cancer and we like to believe the cancer is gone, but children diagnosed with PH+ ALL have a fairly high relapse likelihood. It would drive you crazy to dwell on the fact that relapse is a very real possibility and I do not think that Susan and I do. However, as a parent you must believe that you are doing and have done what's right for the child that God has placed in your care. Sarah's medical team is great and they are working together to develop a "relapse management" plan. We should be able to share more by next Tuesday regarding the direction relapse monitoring will head.

As a family unit, we are trying to regroup and get some direction and routine under our feet. The children's chores (or jobs as I call them), home schooling, work, are all starting to stabilize again..., slowly. The stress level at home (mostly Susan and me) is still high, but we recognize it and are working on it.


We have always and continue to appreciate your prayers for Sarah and our family.
-Ben

The photos below are of Christopher and Katie at the beach last Saturday.

Day +47: Home-Hospital-Home-Hospital

Since the last posting on Day +40, Sarah has been released from a 3 day stay at BCH and had 2 outpatient visits.

Sarah actually came down with what looks like some kind of virus that put her into the hospital last week for 3 days (Wed. PM - Sat. PM). Since she was not getting any worse over those 3 days, she was released and came home Saturday. She continued with a low grade fever until Monday night.

I worked from home while keeping the kids on track Tuesday while Susan took Sarah to BCH for an outpatient visit. They checked Sarah's blood counts and her cyclosporine levels. The blood counts look good, but her cyclosporine levels were high. High cyclosporine levels are bad and can be toxic (mostly due to renal failure). She is not in any immediate danger, but the doctors want to keep her level deemed tolerable.

The high cyclosporine level Tuesday resulted in another hospital visit today (Wednesday) to check for proper kidney function and of course her cyclosporine level. We were told to reduce the amount we give her at home and bring her back in on Friday for additional testing. It looks like more work from home for me this week.

Sarah is still getting fluids overnight via pump since she hasn't ramped up on her own. Not a big deal, we'll keep working with her on fluid intake. It's just a matter of time for that to return to normal. Makes me wonder how many other things are going to return "back to normal". I would certainly like for Sarah to, but at the same time, I do love her every bit as much as I did before her diagnosis 4+ months ago.

Sorry for the delayed posting. We're still trying to catch our breath since Sarah's release from the BMT ward 2 weeks ago.

-Ben

Day +40: Well, She Got a Fever

This is day 40. I'm grateful to God to be able to say that. Things have been going pretty smoothly over the last week. Pretty smoothly means not perfectly smoothly, but then again what ever does.

I'll start with the good news again...

Sarah's blood counts have been going upward at a nice clip. The doctors are pleased with that and so are we. I guess Betsy had some good blood in her when she donated her bone marrow. Sarah has been eating a little. Not a lot, but she does eat. She is getting fluids via a pump through her central line over a 10 hour period every night. She does drink on her own, but not enough to come off the pump yet. Her vomitting has pretty much completely stopped which is awesome. The other children really enjoy having her around again and help her in any way she needs help. Sarah has enjoyed having them around and I'm certain being with them and in a familiar environment is having a positive impact on her emotionally and physically.

Unfortunatley...
Sarah developed a low grade fever this evening and Susan is driving her to Boston Childrens
Hospital right now. Both Susan and I (and Sarah) are really tired, but we have to follow the rules if Sarah is going to pull through this. If Sarah's temp measures 38C two times in one day or hits 38.5C once, then we call the doctors and they tell us to head down to the hospital. Neither Susan nor I are terribly worried with this low level fever and we think she will be out of the hospital again within a couple of days, but we can't take risks with Sarah's life at stake.

During Sarah's outpatient clinic visit yesterday, Susan heard about a small girl from the BMT ward that died from an infection in her central line. I am saddened for the family of the small girl and pray for theircomfort. I also pray that Sarah will stay on this side of the razors edge she is walking on. I also acknowledge that God wants Sarah and her family to be on that razors edge at this moment.

Sarah has made it over some big hurdles and we are relieved for that, but she has many more to go over throughout the next 6-12 months. Please pray the current fever subsides and Sarah is returned home quickly.

On a side note, I returned to work yesterday. One of my families biggest immediate challenges is to restore some semblance of order and routine in our life. Work certainly is a big part of that not to mention bringing home the bacon (and insurance coverage). I have been away from the office and not working for 6 weeks. That's the longest consectutive period of time I have not been working since I began working at the age of 16. My employer has been and continues to be very supportive with time off and monetarily among other things. I feel my company has demonstrated a level of loyalty and decency that is uncommon today. It has been 10 years of my life well invested.

-Ben
Matthew 14:26-32

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

Bubble Parade

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

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

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

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

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

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

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

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

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

-Ben

Isaiah 54:7-16

Hugging Michael & Welcome Home Banner

Day +28: Hospital Release is Imminent

Sarah's Blood Count's Today

It’s been a while since the last update, so I’ll do the best I can to fill you in without making the post too big.

The good news first:
Sarah’s blood counts are super. Sarah’s new bone marrow engrafted around Aug. 15, Day 21 (see graph at top of posting). They’ve steadily increased since then. Her ANC is ~1,760 and her WBC is 2,660 today. This is about what she registered when she was admitted on 7/18.

Sarah got to go outside yesterday. There’s a little park like garden at the hospital. Susan and a nurse took Sarah for a walk and to play there. The nurse had to come because Sarah’s morphine is continuously pumped through her central line.

Starting today, Sarah will no longer be on any continuous (24 hour) drugs or medication. That means she can be unhooked from the pumps for a short time each day. For Sarah (and everybody else) that’s a big deal. Sarah was really excited and clapped her hands when she heard that. I felt like doing it too. The next time the kids come down to visit will be the first time our family has been together since admission (5 weeks). It will only be for a few hours, but it will be the beginning of feeling “normal” again.

Not so good news:
Sarah was diagnosed with pneumonia. Earlier this week, the doctors told Susan that Sarah should be doing better than she is this far along into the BMT. They did a CT scan of her abdomen and noticed what looked like pockets of pneumonia in her lower right lung. It was a tough day for Susan and Sarah at the hospital. The doctors immediately put her on some other antibiotics. The doctors were actually glad to find the pneumonia since they now had something to assign her mystery symptoms to (low level fever, low oxygen sats at night). The pneumonia is prolonging her stay at the hospital, but probably only for 1 week. We hope to be out of the hospital be mid-late next week. We’ll see…

It feels like a steep, rocky cliff Sarah has been climbing up since her diagnosis on May 04. The BMT has certainly been one of the more threatening parts of that cliff, but she is still climbing upward. Sarah has a long road to recovery, but we feel really good about Sarah’s engraftment and are relieved to have that part of her treatment behind her.

We are thoroughly cleaning the house in preparation for Sarah’s return home. It’s good to have lots of little hands to help scrub walls. Monday, Susan and I will begin to be trained for Sarah’s care and preparation for her release.

Thanks for all the meal support that folks have provided over the last few months. That has taken a big load off our family and given us support and comfort throughout all this. However, with Sarah coming home within a week, we will not be accepting anymore offers for meals. We are tightening down on anything that could lead to family members getting sick. The Cyclosporine Sarah will be taking for the next 6+ months is intended to keep her immune system suppressed to prevent her new bone marrow from rejecting her body or her body from rejecting it. Keeping the family from getting sick is going to be a real challenge.

Please pray that Sarah will come home next week, that we’ll be prepared for her return and that no one in the family gets ill for the next 6+ months (I know that’s a big one to ask, but just do it).
-Ben

Judah and Michael Cleaning for Sarah

Hanging On

Since most of the posts are about Sarah I thought I would let everyone know what has been happening at home, at least on one day at home this week. Tuesday morning Betsy and Jacob were going to get a ride down to the hospital with my friend Donna for a visit with Ben and Sarah. I over slept so we had to really hurry since the departure from Donna's home was 7:15 and it was already 7. As we were rushing out the door John, Judah, and Michael came up from their room. I told them as quickly as I could where we were going and to go back to bed. As I was reached the Jeep Michael came outside crying. He was standing at the top of the stairs crying and saying he couldn't breathe. He was pale, shaky, and taking rapid shallow breaths, and then he threw up. (Anyone guess where this is going?) Not knowing what to do I abandoned Jacob in the Jeep, came back into the house, sent Betsy out to get Papa, and paged our beloved pediatrician Dr. B.. Obviously Betsy and Jacob missed their ride to Boston and boy was Jacob annoyed. Though he really did try to hold it in. Dr. B. suggested we get Michael a blanket and sit quietly with a book. It didn't take too long for Michael's breathing to return to normal and for his color to come back. Dr. B. showed up about and hour later and declared (bet you already know) that Michael had an anxiety attack. Which I already guessed. It was so heartbreaking to see an actual physical representation of the stress that Michael (and probably all of our children) is experiencing as a result of Sarah's illness. It's no ones fault. We are doing the best we can. This is just really hard on everyone. But after seeing Michael's anxiety I am going to try to do better. Smile more, cry less, play more games, take everyone for a hike, say "yes" to ice cream, tell a joke (maybe), and I was thinking we might get a WII since those are games several of us can play together, and last but not least I am going to restart keeping a list of the things I am personally thankful for. Here is today's 1. I am thankful our children really do love each other (even though they fight) which is evident in that they play together and read to each other and do their best to make Sarah happy when they see her. 2. I am thankful for all the wonderful people out there praying for Sarah and all of us. 3. I am thankful for the selfless people who gave up a month of weekends and some weekdays, to put in our new floors. 4. I am thankful Sarah actually has an ANC 5. And for all of the dinners that have been brought to us over the last few months. Cooking for all of us is a lot, effort and money wise. Thank you! It's a short list but it is a start.

-Susan

Day +21: Turning the Corner

Sarah’s oxygen saturations (sats) have been normal today. This started during her afternoon nap yesterday. Her sats were good when she slept last night and during her nap this morning it still looked solid.

Sarah’s WBC and ANC are both climbing. Her WBC is at 1230 and her ANC is at 520. That’s right, she hit >500!!

She hasn’t had a fever or nose bleed for a couple of days too.

When the doctor made her daily rounds, she said “Sarah seems to have turned a corner”. I have to admit, it looks that way to me too.

The staff will start slowly dropping her antibiotics now. Her continuous morphine rate was lowered from 0.5mg/hr to 0.4mg/hr today. The rate will be decreased slowly over the next several days. She can still push the little button for an instantaneous hit when needed.

I’ll give another update in a couple of days, but for now Sarah is back on track and we’re feeling pretty good about that.

-Ben

Day +20: Cells Counts Look Good

I’ve been on duty at the hospital since Sunday. Susan returns Friday and I go back home. Susan brought all the children to visit Sarah yesterday (Wednesday). Sarah responded well to their being here. The other children read her stories and played with her. It really lifted her spirits and made her feel happy. It made the other children happy too. The children are pretty normal, sometimes bothering each other, sometimes playing with each other, sometimes helping each other, definetly loving each other. It’s good to have a family and to me, the bigger the better.

Sarah looks great today. My previous posting showed a from-to photo set of Sarah and man did she look (and feel) different. We put that photo set on the posting not to scare folks, rather to give an idea of what was really happening and what Sarah really looked like. She’s having a hard time taking her meds over the last few days, but beyond that she is a real trooper. She is playful with the doctors, nurses and volunteer staff. She still inspires me with her resilience and how she just keeps actively participating in her own care as more stuff has been slammed at her. She is a superstar.

No transfusions for a couple of days. Nose bleeds have subsided with only one slight bleed yesterday. Sarah’s oxygen saturation (or simply sats) are still dropping (<90)>95). Normal range is 95 – 100. The doctors do not know why this is happening and said it’s not an expected part of her treatment. The doctors are doing an EKG and echocardiogram on Sarah today to rule out heart related issues. She had another x-ray Tuesday which came back clean (no problems found). They have very thoroughly tested Sarah to determine why the sats are low (their words) with no smoking gun yet. This morning the doctor told me she may simply not be breathing in as deeply when she sleeps and the mucocitis is closing off some airflow. The doctors are not worried about he low O2 sats directly, rather missing some underlying cause for the low sats. They may not definitively nail down the cause before it goes away which will be fine with me. More waiting and watching with this one, so keep the low sats in your prayers.

I asked if we could rest easy regarding VOD and the doctors more or less said yes. Can’t say shes all set, but that’s the side of the fence their on. I feel pretty easy on that front based on discussions with the doctors and what I’ve read about VOD too.

ANC’s are looking good! While her ANC dropped Monday to 190 (from 270 Sunday) and stayed at 190 Tuesday, it went up to 440 today. Her WBC also climbed and sits at 10800. A little up and down is OK, but it looks like she’s getting close to the targeted 500 for 2 days. We think her ANC is going to top and hang above 500 over the next few days. We feel great about that. Engraftment feels good. It’s not a good idea to test God and certainly not good to be presumptive about what God will and will not do. I simply believe that what he does (his will) is meant and done for good. His will be done, not mine. However, I will thank him for listening and acting on the prayers of so many people for Sarah and my family.

The doctors said it looks like the thing that will keep us from going home real soon is the low O2 sats. We are going to be working on the other items I listed on the previous posting so when the sats go up, we’ll be ready to head home.

-Ben
Genesis 45:3-8

Day +17: Engraftment Underway

Sarah Today

Sarah Before Diagnosis

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

The 7 children at home are doing OK, but I think they could really use more routine in their lives. Hopefully, routine will return in the near future. I do not want to just say “they’ll be alright” or “they can tough it out”, because how they are experiencing all this will have a lasting impact on their future. Susan and I are trying to involve them with visits to see Sarah and our going back home when possible. This is definitely a strain on our family and having Susan’s parents helping us has made all the difference. We are so grateful for their tremendous support.

We are still experiencing a mix of comfort and good news along side concern surrounding Sarah’s physical condition. The doctors assure us she is doing well at this stage. I acknowledge the clinical progress made, but she looks and feels physically shot and is sleeping most of the time now. The nurses tell us the constant sleeping is normal. I’m really hesitant to claim BMT victory yet, but I’ll quickly acknowledge God’s graciousness in saying “yes” to our and many others prayers so far. I would ask you to continue humbly and fervently praying for Sarah’s return home and complete recovery.

Sarah is sleeping through the night (and most of the day). Last night she sort of moaned or whimpered a lot. That kind of makes it hard to sleep when you’re on “hospital duty”.

Sarah is still getting platelet transfusions and nose bleeds. The doctors have determined that the swelling, and low oxygen saturation while sleeping, is due to reactions from the blood product transfusions. We are going to reduce the red blood cell and platelet transfusions to the absolute minimum we can manage. This should minimize her swelling and her low blood oxygen readings when she sleeps. It will also reduce her bodies’ likelihood of growing dependent on the transfusions and lengthening the time it takes for her body to do the heavy lifting.

We don’t hear anymore talk about VOD, so we think that scare is behind us. We will check on her bilirubin count later today though. Sarah is only slightly puffy from fluid retention and she hasn’t had a fever for several days. Please keep praying on this one.

The assessments of her CAT scans last week came out clean. No issues with her lungs and nothing negative showed up from her head scan.

Sarah’s ANC was up to 270 today. That was awesome news. That’s up from 150 last Thursday. We need her ANC to be above 500 for 3 days to be a candidate to leave the hospital. Her white blood cell count was also up (490). Now that it’s above 300, they’ll check her ANC every day.

I attached a graph of Sarah’s WBC and ANC progress to date. Sarah’s engraftment looks like it began sometime mid-last week. Click on the image at the bottom to see a larger version.

The targets for Sarah to go home:
1. ANC >500 for several consecutive days
2. Eating and drinking “enough” on he own
3. No longer dependent on intravenous drugs for pain management

-Ben
Matt 14:35

Day +13: Bumpy 2 Days

Hanging Out with ASA and Sarah

Sarah’s platelet counts have not climbed at all yet, so she is still getting an occasional nose bleed and receiving platelet transfusions. The nose bleeds are less intense though and a little easier to stop. Her platelets were the first to drop during transplant pre-conditioning and will probably be the last to come back to normal levels.

More importantly though, Sarah’s Absolute Neutrophil Count (ANC) was higher today (just what we want to see). She went from 60 (per microliter of blood) on Tuesday to 150 today. Neutrophils are a type of white blood cell that fights infection and is the primary measure of when Sarah is “safe” to come home. Her white blood count (WBC) is also rising and sits at 240 today. Once her WBC hits 300, the doctors will check her ANC count daily. The ANC and white blood cell counts track together pretty closely.

Sarah started retaining fluid sometime after she was admitted into BCH. This was detectable from her daily weight measurements. Not incredibly troubling until yesterday afternoon when she became really puffy around her eyes, cheeks, lips and generally everywhere on her body. Not just a little puffy, but really puffy. At the same time, she developed a fever of ~102.5F and experienced pain in her stomach area, legs and arms. This bothered Susan and me and even more so when the doctors said they were troubled by these symptoms. The Fellow that was working the BMT ward and checked Sarah mentioned the possibility of veno-occlusive desease (VOD) which is a problem with the liver resulting from chemotherapy as part of pre-transplant conditioning. Apparently it’s difficult to diagnose VOD definitively until it’s progressed a lot and even then, there’s not a lot of treatment for it. The Fellow mentioned a fairly new drug they could administer if it turns out to be VOD. The team of doctors don’t think she has VOD though. Sarah’s abdomen is not distended and her bilirubin count is normal. These are two symptoms that are needed to say she has VOD. I’d be lying if I said we aren’t worried though. Sarah did look a little better today (less puffy) and her temperature was only slightly elevated (~99F).

Sarah had a CAT scan of her lungs today to check for anything that might have been missed or was not evident in the x-rays she’s had over the last week. She also had a CAT scan of her head since she was complaining of headaches over the last couple of days too. Initial assessment of the head CAT scan looked clean and the upper area of her right lung looked a little cloudy. We expect to hear more from the doctors after they evaluate the CAT scans more fully tomorrow morning.

I guess it’s sort of a mixed message today, we are seeing signs of transplant engraftment (good news), but Sarah has some mysterious complication (not good news). Sometimes the doctors don’t figure out what causes fevers with the BMT patients and frankly, it will not bother me if we ever know what is causing Sarah’s reactions as long as the reactions go away. Please pray specifically for Sarah’s current complication to subside and for her to stay on track for recovery.

-Ben

Day +11: Return of The Nose Bleed

Sarah had a rough night last night. She developed a nose bleed around 2:30am. Susan and I noticed new bruises and petecheia on her legs and head late in the evening. We pointed them out to Sarah’s evening nurse and said she probably needed a platelet transfusion, but the nurse did not actually give Sarah the transfusion until after her nose bleed started. That was a little irritating because we think the nose bleed could have been avoided. Normally a nose bleed is no big deal, but when you’re in Sarah’s shape things spiral out of control pretty quickly. This is the second time she went low on platelets and developed a nose bleed. The progression is something like this: nose bleed followed by vomiting from blood in her stomach followed by coughing and sore throat (on top of existing sore throat) then wheezing and then an x-ray to her lungs to make sure wheezing isn’t pneumonia. It made for a long night.

The goods news was that the new x-ray looked better than the first one. We don’t think there is any pneumonia concern at this point. No fevers today either. Sarah’s bottom is beginning to look better (after the skin breakdown from diarrhea).

The folks at Ronald McDonalds House put us in an apartment today. It is intended to bridge the gap from leaving the hospital to going home. We are not sure if we are going to stay there after Sarah is released from the hospital or make the drive from New Hampshire 2 – 3 times a week. The apartment will be a big help for now though. Only 4 people can stay overnight, so we plan to have some of the children stay there with one adult.

No real signs of engraftment yet. Sarah did have an Absolute Neutrophil Count (ANC) of 60 yesterday (Day 10), but until her counts are checked again Thursday (Day +13) we really can’t say the engraftment has taken hold. We’ll post an update on her ANC Thursday evening. She needs to have an ANC >500 to be able to be released. We definitely do not expect that this week, but we are hopeful about next week.

Thanks for your prayers and concerns and help. Please continue to keep Sarah and our family in your prayers.

-Ben

Day +9: Nausea Back Under Control

Yesterday, Sarah threw up seven times throughout the day. The doctors took her off Reglan+Benadryl which is used for nausea. The Reglan was dropped to try and find the source for some tremors she has been experiencing. The tremors went away, but the vomiting came back strong. The doctor and I discussed the options for get the vomiting back in control. We’re trying a lower dose of Reglan and see if we can find the sweet spot for the tremors and vomiting. So far so good this morning.

Susan's mom and dad brought some of our children to visit with Sarah at the hospital Saturday, Jacob, Judah and Betsy. It really cheered Sarah up and she was sad when they had to leave. Her family means so much to her and it's really easy to take that for granted until you see her embracing them (not just hugging). Her love for all of us right now is hard to describe, I feel blessed to see and be a part of it.

No more news on the viral pneumonia. The doctors are watching her closely, but are not thinking there is much to do yet. Could be just a tiny case of pneumonia or maybe not pneumonia at all. The doctor told us they are going to continue watching her based on her current condition. We are actually encouraged by that.

Sarah has not had a fever since yesterday evening. She is taking a nap this morning. She did not nap yesterday at all. I don’t think it was because she was not tired. I think it was the endless vomiting. Now that she is back on the Reglin+Benadryl, her life is a little better. For Sarah, a little better is huge.

Susan and baby Asa (4 weeks old now!) came back to rotate at the hospital with me. I’ll be here until Wednesday or Thursday.

Thanks for all your prayers and meals and floor repair and cards and support with the children and emails…

We miss a lot of things from before Sarah’s diagnosis and would give anything to have her health fully return, but we will leave that in God’s hands and believe God is doing something beautiful in our lives. Please pray Sarah's new blood engrafts within the week and give thanks that God has given us so much love in our family.

-Ben
Ecclesiastes 3:10-12

Day +7: Closer to the Bottom

Sarah Today

I am back at the hospital replacing Susan and her father. Today (Friday) has been a good day for Sarah so far. She has managed to keep all her oral medication down and hasn’t thrown up yet. We colored some, made some small cards for the children at home and used the webcam to chat with Susan and the folks back home and of course slept.

Yesterday was not quite as easy. Sarah’s platelet count was really low and some blood was tracing her lips from mouth sores. The blood also drooled out onto her pillow while she slept. This did not cause her any pain, but it was a little disturbing to see. The nurses gave her a platelet transfusion last night due to her low counts. Sarah also developed a fever resulting in an x-ray of her lungs. The doctors told us it looked like a very mild case of viral pneumonia. They are doing some follow on testing to determine if she has pneumonia. Her fever has been gone today, but it returned ~8:00pm tonight.

Sarah’s has been on morphine for pain in her mouth and throat for several days now. She looks worn out and is sleepy a lot. She is not suffering greatly with the continuous morphine drip she is now on. Sarah can push a small button to momentarily increase the delivery of the morphine when she experiences heightened pain like when she takes her oral medication or vomits. She can only do this every 7 minutes, but currently only uses the button about once an hour.

The doctors told us Sarah is still doing great so you can imagine we don’t want to know what “not doing great” is like. We are grateful that she is doing as well (and as expected) as she is, but at the same time also very anxious and concerned about her fever and any infection that might crop up. Please pray specifically that Sarah will not have any infections that add complications to her recovery from the BMT during and after her stay at the hospital.

On a side note, today is Susan and my 16th wedding anniversary. Happy anniversary Susan, I love you.

Thanks for your prayers and kindness folks…
Your husband, father, son, brother and friend,
-Ben
Matthew 6:33-34

Since Ben wrote all of this a few more things have happened. Sarah's fever shot up to 103 and last night she developed a bloody nose that wouldn't stop. For the fever they gave her tylenol and for the nose another platelet transfusion. Ben said it was kinda a rough night. I am tempted to jump in the car and go back to the hospital.

Day +5: Update from Susan

Sorry for the delayed update on Sarah. I pretty much manage the blog and Susan and her father replaced me at the hospital Sunday (Day +2). I've also been busy over the last few days trying to get things ready at home for Sarah's eventual return.

-The below update is from Susan...
Sarah had a good day today. She played with toys and went to the playroom twice. I even managed to get her to eat a tiny bit, three bites of chicken noodle soup, a couple licks of ice cream, and a piece of chocolate. Wow! Right now she is playing with her Papa reading a pop up book. To turn the page Sarah says "ready set go!". Pop up books are so fun.

Yesterday wasn't such a good day. Sarah threw up about six times and had a noticeable increase in pain from mouth and throat sores. So we asked the Doc's to put her on a morphine drip. That means she gets a continuous supply of morphine through her IV line. She started at a dose of 0.1 mg. A very low dose. It seemed to make a difference yesterday but today when she woke up her face was SAD. When I asked her how she felt on the FACES pain rating scale she was the saddest face, a 10. So we upped her morphine drip to 0.3 mg. The little extra dose has made a big difference for her. She seems much more comfortable.

We had a little excitement yesterday when Sarah broke one of the connectors for her tubes. She was getting down off the parent bed and the tube went smack, right on the floor. She had an alarmed expression and so I said it's OK Sarah no big deal. When she continued to look at the tubes I realized it wasn't OK and the white lipids, that supply her fats, were leaking onto the floor along with her blood. I quickly told Dad to "press the nurse button and go get the nurse". He ran out in to the hall and said, "we need help". Boy did they come fast that time! I guess that happens all the time. But it sure was alarming seeing Sarah's blood dripping down from the opened tube, and knowing that anytime those tubes are opened they pose a risk for infection.

She has started to lose the rest of her hair, just a little at a time right now. Her mouth is starting to look a bit strange as a result of the conditioning, red gums and the inside of her cheeks and the roof of her mouth is starting to break down. There is some swelling and white patches, and the beginning of the red sores.
-End of Susan's update

The doctors tried to brace us for the need to administer morphine to Sarah. The pain would be pretty unbearable for her if not for the morphine. We were not excited about giving it to her,but the time came to do so. Please pray it will continue to be effective and that she will not need to be on it long. One of the biggest risks with Bone Marrow Transplants is infection. An infection can move pretty quickly in a person with no immune system. It is one of my biggest concerns at this stage of Sarah's treatment. I know she is in a solid medical facility with top notch medical folks, but continued prayer for her is much appreciated.

I go back to the hospital tomorrow, Thursday to replace Susan and John (Susan's Dad). By the way, Betsy is doing great after donating her marrow last Friday. She seems 99% from what I can tell. The other children are looking forward to seeing their mom again tomorrow.
-Ben

Day +1: Past the BMT

Sarah Comforting Betsy After Her Bone Marrow was Harvested





Sarah’s transplant was yesterday. Harvesting the bone marrow from Betsy was an actual operation, albeit a seemingly simple one. I was with Betsy when she was prepped and given the anesthesia that put her under. She was very brave and gave no indications she was nervous, even when asked. Susan was with Betsy when she was moved into the recovery room. Neither of the girls felt any pain, but Betsy was groggy most of the evening. The day was mostly filled with activity surrounding Betsy, but the high point of the day culminated with Sarah’s transfusion.

It was very heartening to see Betsy’s donated blood in the clear IV bag as they hung it on Sarah’s pump pole. Sarah has had blood transfusions before, but knowing what this transfusion was for and who it came from was a very profound moment for Susan and me. I can’t really describe fully how it felt watching Betsy’s blood travel down the little tube and go directly into her sister Sarah’s little heart. It was all at once unbelievable and wonderful. While Sarah’s fate is still uncertain to us (but certainly not God), the change it will make in Sarah’s life will be to give Sarah a chance to continue her life. The change in Sarah’s life can even be measured in her blood type, changing from type A+ (her original blood type) to O+ (Betsy’s blood type).

I am thankful to God for providing two donors for Sarah, but I will also always be grateful to Betsy for what she has done.

The doctors told us what we should expect over the next couple of weeks. Betsy will grow her donated bone marrow back completely. Sarah will be watched closely to manage any pain that will likely develop from the radiation treatment. Morphine will be administered if she is suffering greatly. We are told each child responds different physically, so we’ll be watching and praying that she stays strong.

Some photos and a short video of Sarah and Betsy during “Day 0” accompany the post today.

-Ben
Isaiah 64:3-9

Sarah Recieving Her Bone Marrow

Day -1: One More Day to Transplant

It’s about 9:00am and Sarah just got back from radiation treatment. She got tired so she’s napping now. Sarah has one more radiation treatment this afternoon at 1:00pm. When she gets back, we can treat her skin for the soreness from diarrhea with ointment. She hasn’t had any ointment or oil or anything on her skin because whatever is on the skin during radiation will lead to skin burning and extreme discomfort. Believe it or not, she has not been complaining like you’d think and certainly not like I would be about the soreness. It makes me wonder if she just can’t feel it anymore.

Sarah slept through the night and I did too (mostly). Sarah is becoming comfortable with the nurses and plays some with them when they visit her. Yesterday Sarah told me the night nurse that was assigned to us for Wednesday loved her. She said is was because the nurse was nice and kind to her.

The doctors and nursing staff have been asking (a lot) if she has started to feel any pain form digestive tract breakdown yet. She has not. They said she can start having morphine when she/we feel she needs it. The care team makes it sound inevitable and I am honestly a little worried about it. Please pray that she will not suffer greatly from this side effect.

Tomorrow is the "Day 0", the day of the transplant. Susan's father is bringing Betsy to the hospital today for Pre-op to get ready for the BMT Friday. Friday will be an exciting and busy day for us. I’ve read literature that describes the transplant as “rescuing” the patient. Not from the original disease, but from the result of the high dose chemo and radiation. That’s a little frightening to think about, but we're still feeling positive about Sarah's outcome.

I'm glad Susan went home for a couple of days and spent some time with our other children. It's easy for them to slip into the crack with what's going on with Sarah. It is something Susan and I are trying to manage, but I know whatever we do is not going to be enough emotional support for them during this period in our lives. Thankfully, God is part of our family and he is always with them.
-Ben
Ephesians 3:14-16

Day-3 Radiation Side Effects Begin

This is Sarah’s second day of TBI. She has two 16 minute treatments per day from Monday to Thursday. She started the vomiting and diarrhea shortly after her first treatment yesterday. The nurses are working with us to find the right cocktail of medicines to minimize her nausea. She’s pretty sore from the diarrhea (after only 2 radiation treatments). It seems to help to keep her showered/rinsed off and dry. Sarah is still in good spirits, and still plays, but doesn’t eat much now.
I thought it would be a good idea to list some specific things that folks could send Sarah at the hospital to keep her spirits up:

1. Get well cards with some cheerful words

2. Stickers of any kind

3. Books for child age 3-5

4. Preschool workbooks.

5. Small stuffed animals
Sarah knows she is getting radiation treatment, but does not know that the radiation treatment is what is giving her the nausea and diarrhea. We’ll tell her more about that once the treatment is over this week. For now, she doesn’t mind going to the treatment and being still during it.
It’s been a busy day, so I’m cutting the post a little short today.
-Ben

Sarah loves to take care of herself. She takes her meds. flushes her line and brushes her teeth.

Day -7: With Sarah

Sarah napping in the BMT ward

Sarah made it through her first day of chemo with no outward side effects. She was very energetic and talkative Saturday. It’s amazing how many things a little girl can do with stuffed animals. She did vomit 3 times from Intravenous Immunoglobulin (IVIG) that was administered around 6:00pm Saturday. She also got the chills and leg cramps from the IVIG. The IVIG was given to push up her immune system before her blood counts drop this week.

Susan stayed with Sarah in her room Friday night and I stayed at the Ronald McDonald house about 0.5 miles away (a brisk 10 minute walk). I stayed with Sarah last night. Susan and I will be at the hospital the first couple of days into Total Body Irradiation (TBI) that starts Monday. Tuesday evening, Susan will be going home to spend time with the other children until Betsy comes to the hospital for the transplant Friday. Susan is starting to doubt the wisdom of her staying with Sarah alone, without another adult. Susan was nursing Asa last night when Sarah started getting sick. We'll just take it as it comes.

Asa did not give Susan any trouble Friday night though. He pretty much nursed and slept. The nursing staff at Boston Childrens Hospital are very kind and attentive to Sarah’s needs.

Our friends John and Shera came to see us today. Since there are eight in their family they had to wait in the Resource Room and take very brief turns visiting with Sarah in her room. When they left Sarah told Susan that it was “so fun playing with them”.

Sarah is a super patient. Even at >3-1/2 years old, she wants to participate in many aspects of her treatment. She takes oral pills on her own, she likes to use the syringe to help flush her central line, she offers her arm for blood pressure checks readily, brushes her own mouth and teeth with the funny sponge thing they gave us, etc. Even immediately after vomiting, she's ready to move on and even smiled right afterwards last night. I do think I'm learning something about from her. I am grateful to God that she is strong and doing as well as she is and for bringing her into our lives.

Feel free to add comments to the posts or send emails or call if you want more info or a deeper insight into how Sarah is doing. I do not mind talking or answering specific questions if you have some. Otherwise, look for more on Sarah Monday or Tuesday.

-Ben

1 Peter 4:9-11

Sarah playing with Dora

Day -8: It's Time To Go To Dana Farber

The day has come to head to Dana Farber. We've gotten most of the house prep done that's needed, ordered air purifiers, hung up soap and towel dispensers, ordered the water testing kit, cleared out and painted the room Sarah will stay in when she returns, etc., etc., etc...

Right now, we don't feel like we know what to do. We're just going down to Dana Farber and seeing what happens next. We sort of think we now what to expect, but with absolutely no control over it.

The stress in our house over the last week has been palpable, but we have managed to laugh about stuff just about every day. More and more folks are helping us or are lined up to help us with meals and jobs that need getting done with the house (doors that rotted out, floors that are getting thinner, painting walls, going to the dump). I know I mention the help from others on most of the postings, but it really is an important, valued and appreciated part of what's happening within our family.

It could be a tough weekend/week with the chemo/radiation so please take some time and pray specifically for Sarah to respond favorably to the treatment this week.