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