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