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.

Day -10: Hospital Hand-off

This past Monday (7/14) was the last time we will visit Dartmouth Hitchcock for several months. Sarah's next hospital stay (beginning 7/18) will be with the folks at Dana Farber for the BMT. It feels a little strange saying it, but we'll miss the doctors and nurses that we've grown accustomed to seeing at Dartmouth. They have been very good and kind to Sarah, Susan and the rest of us. We will always remember them in our prayers and in our hearts. We will try to transition back to Dartmouth after the BMT, if Sarah's continued treatment allows.

Sarah had her PICC line removed from her arm and the replacement central line installed (Broviac) Monday, 7/14. The new central line is a little unsettling (appearance and apparent frailness), but we'll get used to it. Accepting the unacceptable, part of our new life. I should mention that Sarah is feeling and doing great. She does express some discomfort with the Broviac so soon after the surgery, but that doesn't stop her from playing, laughing and enjoying her life. I always wondered why people described their sick child as an inspiration or their hero, but Sarah is straightening that out for me.

The days on the blog will be recorded from negative to positive until "Day 0" (transplant day) is reached. After Day 0, I'll record them in positive numbers. The folks at Dana Farber said that's how it's done, so we're on the bandwagon. I suppose it's like starting with a clean slate. Apparently, it's sometimes looked at as another or a new birthday too.
-John 3:6-8

Day -15: Getting Ready for the BMT

It has been a busy week for Sarah (and the rest of us) so far.

On Wednesday, Sarah went to Dartmouth for eye testing, bone marrow aspiration, bone marrow biopsy, intrathecal chemo therapy, blood work and a CAT scan. It was a full day, but we got it all done.

Today (Thursday), Susan and I took Sarah, Betsy and Asa to Dana Farber for a discussion on the possible side effects of radiation. They all sounded bad too us, but we didn't hear anything we haven't heard before, so we were not in shock at any rate. Since Betsy has been chosen as the bone marrow donor, she had to be evaluated by a psychologist before the BMT. Susan and I insisted one of us be present during the evaluation which took a good amount of persistence on our part as the psychologist was very much against either parent being present. We won, they lost.

Sarah is feeling very good and is off all medication until admission on 7/18 for the BMT. Her blood counts are good and at the level the doctors at Dartmouth and Dana Farber want to see them. It breaks our hearts to know that she is feeling, looking and behaving so good and healthy and in about 1-2 weeks she is going to be hammered with some pretty intense medical procedures that will render her incredibly and life threateningly sick. Please pray for Sarah to be strong and respond positively while she is at Dana Farber. All of the children are special to us, but God is using the recent events in Sarah's life to remind us how much she means to us. He is also showing us how much he loves her through (and by using) us and in doing so, showing us how much he loves us.

We have a list of things we either need to do or need to buy before the BMT (really before Sarah returns home from the BMT). The buying part is easy, the doing part is a challenge. I'll post some of the things we are trying to do before Sarah returns home. If you think you can help out with some, send us an email (see calendar at bottom of blog for email address). Thanks for the help we have already received and continue to receive. Even small things have made a meaningful difference (like Sarah receiving a get well card, or calling to see if we need anything at the drugstore while out).
-Hebrews 12:9-13

Sarah has a new brother!

Little brother David Asa

Susan delivered the baby at ~9:00am this morning. He (boy) was 7.6 lbs, 22-1/2" long. His name is David Asa. He is healthy and very alert. Susan is doing great and the delivery was pretty much the same as the previous eight, fairly smooth. Actually, Susan's midwife came to our house yesterday to help induce an early delivery. Whatever Susan and Cindy did apparently worked pretty good.

We are relieved and very grateful that the baby came before Sarah was admitted to Dana-Farber. We now have ~two weeks to focus on preparing for BMT admission.

Sarah's leukemia is still in remission, but the doctors are watching her closely. We need her to stay in remission and not get sick to be able to move into the BMT. If she slips out of remission, then we will likely have to go through more blocks of chemotherapy and shoot for the BMT again. We do not want that to happen particularly due to the additional intrathecal chemotherapy that would be involved. The intrathecal chemo can cause neurologic and cognitive side effects. We worry about a lot of things lately, but the intrathecal treatments are high on our list.

However, today was a very good day. We were all together, we have another person to love in our family and our load is a little lighter now. Our day was filled with joy and we find ourselves blessed again.

-Psalm 21:1-7

Below...

Sarah walking at the hospital last Friday before they released us to go home later that evening.

Support Calendar

Someone we know suggested we add a calendar to our blog so folks could know the areas we could use a hand with. Many folks have also offered to provide support over the last 2 months. So, the other day I added a calendar at the bottom of the blog.

The calendar shows some of the support that would help our family (other than prayer). I do not want to downplay or minimize any of the other types of support we have been receiving (email, phone calls, gifts and so on), so please continue to provide support as you can or see fit.

There are also things people are doing, might be doing or have offered to do for us that are not shown on the calendar. In addition, things may show up and disappear from the calendar fairly erratically as we learn more about Sarah's needs and treatment. I guess I'd ask you to be flexible with us as we work through what's happening in our family.

Send an email to me (Ben) or Susan using the link below if your heart is moved towards providing some support (or for any other reason). If you have support you can provide that is not shown on the calendar, feel free to suggest it. I may not necessarily take you up on it, but I will always be grateful for your kindness and outreach.
mailto:jonesshow@msn.com

Not much of an update to give on Sarah today. She had a red blood cell transfusion at the hospital yesterday and a hearing test. Both went well and her hearing is normal. Sarah will have a full day of testing at the hospital next Wednesday that I'll describe on the next posting. Susan is going to be working with her midwife this weekend to see if an early delivery can be induced. It would be good if the baby came sometime before Sarah is admitted to Dana-Farber on the 18th.

BMT is Scheduled

Sarah's PICC line did not need to be removed. Thanks for all your prayers on this. We were so relieved that it could stay and be her means of access for blood work since there is no pain involved. The PICC line will need to be replaced soon with a Broviac central line. The Broviac is a longer term replacement for the PICC. The Broviac replacement is scheduled for Monday, 7/14. Sarah will be anesthetized for the replacement.

We made it to the meeting with the folks at Dana Farber today. It was a long day and filled with lots of questions and answers. Johnny, Betsy and Sarah all had blood drawn today for testing to choose which of the two will be the donor. Sarah is scheduled to be admitted on Friday, 7/18. We learned about what to expect during and after the BMT.

Some key learning's from today's visit:
1. Sarah will be in the hospital for 4-6 weeks and visiting 2-3 times a week after release.
2. Sarah will be vomiting a lot (up to 3 weeks) after radiation ends and be treated for pain (mostly from mouth sores) with morphine.
3. Sarah will be allowed up to 3 healthy visitors in her room at any given time throughout her stay.
4. Sarah will not likely have any cognitive impairment from the radiation, but will likely be infertile.
5. After Sarah returns from transplant, she can not be in public places (restaurants, libraries, stores, church, etc.), but she can go outside (yard, hiking, etc.) for 6 - 9 months.
6. After Sarah returns from transplant, only immediate family members are allowed to be inside the home for 6 - 9 months.
7. The doctor said Sarah's biggest post transplant risks were from other people and poop. There are other things we should be careful about, but these are the biggest.

I will not list the multitude of other things discussed or the update would never end today.

It is difficult to take all this "one day at a time" and Susan and I are challenged to keep our stress in check. Please pray that Sarah will continue to respond well to her different treatment types and overcome her cancer.
-Psalm 119:74-76

Rescheduled Visit w/Dana Farber

Well, Sarah is having an interesting week...

On Tuesday afternoon, the folks at Dana Farber scheduled an appointment with us for Thursday at 9:30am. They were going to answer "all" our BMT questions and check out our two BMT donors and Sarah. The big meeting with the BMT team was actually scheduled.

On Wednesday, Susan and her dad took Sarah to her current hospital for a regularly scheduled chemo treatment in her spine. Sarah did fine, felt pretty good and came home same day. So far so good. Things were progressing as expected (or planned).

Wednesday evening around 10:00pm (Susan and I were headed to bed), one of Sarah's doctors called and said we needed to head back to the hospital right away. Apparently some blood work done that day came back with an indication that her PICC line was infected. The doctor said her PICC line would need to be removed that night and it would be replaced with an IV! We were a little shaken by this since we had recent experience with IV's for Sarah. We also new what was involved to remove the PICC line. In addition, these two procedures would be done with Sarah awake on a mild sedative. Obviously, we were not looking forward to the 1-1/2 hour drive to the hospital. I will not go into the gory details, but the staff at the hospital failed to get the IV in after six horrific attempts all over her body. It was now 3:00am. The sedative was not as effective as Susan and I would have preferred. For now the PICC line is still in and they are treating Sarah with heavy dose antibodies to kill every germ known to man in her system. The doctors tell us the blood work done may have been contaminated, so they are redoing it. Sarah will be able to go home within a couple of days if her PICC line has no germs in it and her neutrophil count starts rising (enough). Please pray for her PICC line and neutrophil counts to rise. We really want her to come back home.

Needless to say, we did not make our appointment with the BMT team at Dana Farber today. However, Sarah's doctor did have extended discussions with the BMT folks rescheduling our visit for next Tuesday. She also determined with the BMT team the earliest admission date of July, 7 for Sarah at Dana Farber. We will not be admitting Sarah on July 7 though since a lot of prep activity is required. Sarah has to go to the dentist, have her hearing checked, have her eyesight checked, and a lot of other stuff to. The good news is the folks at Dana Farber are ready for her. We are thinking 2-3 weeks for admission at this point. And if your wondering, Susan is due to deliver the baby in 2-3 weeks too. It's not as easy as scheduling the BMT later either. If we wait too long, Sarah will need another "block" or round of chemotherapy before her BMT and we don't want that to happen.

We will wait (and pray) and see what God has in store for us. We will also have faith that what he has in store for us is meant for good.
-Isaiah 40:31

A Weekend With My Family

Sarah has been doing really good since she was released from the hospital this past Thursday. She has had a lot of energy and is only taking a couple of drugs and getting one shot in her leg every day at home. She is not eating great, but she is eating and drinking enough.

Yesterday we went to get ice cream at our favorite family ice cream shop. It was outside and they never have a crowd. Fortunately for us, no one else came the entire time we were there. The video of Sarah and Christopher shoveling is at the ice cream shop. We decided to go all out this weekend and met with the small group we fellowship with on Sunday afternoon. It was good to meet with them and chat afterwards. It has been a while since we've done that and after the BMT, we will not be able to meet for quite some time I think.

We hope to recieve a call from the folks at Dana Farber tomorrow and arrange for our first meeting with the BMT team. I did a little more research on BMT facilities tonight and I'm still pretty happy with Boston Childrens Hospital. Not much else to report on. It was a pretty normal weekend with my family.
-Psalm 34:3-4

Calling Dana-Farber

Today I left work early for two reasons:
1. Calling Dana Farber in Boston to set-up the initial face-to-face meeting with the bone marrow transplant team.
2. Sarah and Susan returned home from the hospital after Sarah's 5 day block of chemo treatment.

The doctor at Dana Farber is on vacation this week so we couldn't set up the meeting. They are going to be calling us back early next week to set up the meeting. We're ready for the meeting, but at the same time, we're not ready for it. Please pray that Susan and I will be able to incorporate what's happening into our lives per God will.

Sarah started her most recent block of chemo treatment on Saturday afternoon. I stayed with Sarah at the hospital over the weekend since Susan had a one day (thankfully) bout with food poisoning. Susan and Sandra (Susan's sister) came back to the hospital Sunday afternoon to relieve me. Susan stayed with Sarah until she came home today. Sarah had a fever for days ending Monday night. The folks at the hospital changed Sarah's PICC line (IV that runs from your arm straight to your heart) dressing yesterday. The dressing is the part that hangs outside your arm. This was really unnerving for Sarah and hard for Susan to be a part of (but she did). When I came home from work, Sarah walked up to me smiling and hugged my legs. It felt good to see her and Susan.

We'll be watching for fevers again and doing what we can to keep them at bay. Please pray that Sarah will be able to stay home until the bone marrow transplant check-in. We think the transplant check-in will be near the end of July.

I've been painting the basement after work with Jacob (my oldest son) and some of my other boys. We plan to move the boys into the basement so I can set Sarah and the new baby up in a separate room after she comes home from the BMT.

I'll try to do a better job of keeping the updates more frequent, but frankly it's been a very tiring week.

Our family has recieved a lot of cards, emails, meals, phone calls, taxi service, monetary donations, gifts, help with our children, offers to help..., blessings. I know for certain we have not directly thanked everyone, but Susan and I often talk about the things that you've done and we feel God's hand lifting us up. Thank you...
-Mark 1:30-33

Intensification - Block 1

One of Sarah's doctors told me that her eye lid droop was caused by a chemo drug, Vincristine. He also said it would go away after being off the Vincristine for a little while. I was glad for this news and very grateful to God that she is doing so well.

Susan developed a stomach bug last night. Yes, with all the bell's and whistles. Must be tough when you're pregnant (4 weeks to go!). Susan was sleeping in Sarah's hospital room and I was sleeping at Davids House when she started vomiting. She called me @ 5:30am asking me to trade places with her. I knew this meant she was going home today and not going to be with Sarah on the first day of her new chemo treatment. Susan's father came to take her home around 2:00pm. Susan was with Sarah when the chemo started though.

Sarah seemed to take her first day of Intensification chemo pretty good. It's a little early to tell how the entire 5 consecutive day treatment will effect her. "Intensification" is the treatment period that follows the "Induction" treatment period. Sarah will likely only have one of these Intensification "blocks". Sometimes, and for a variety of reasons, more than one block is conducted. It's a little scary because we don't know how the chemo will effect her or to what degree. It could be really bad or no problem. You know which one we're praying for.

It's a little tough to tell how Sarah feels when she's at the hospital and especially when she's on medication. She doesn't talk or engage much so we kind of have to assume what she's feeling based on what we know about Sarah as her parents. However, she always cheers up when some of her siblings are around her. The children are a blessing in so many ways, but to see them be a blessing to each other is comforting.

I know that many of you pray for Sarah and our family often and I thank you for that.
-Psalm 71:20-22

Another Round of Chemotherapy

View from Sarah's hospital room window

Wow...
Things have changed since our visit to the hospital a few days ago. Sarah developed a fever of ~103.5F during the night Wednesday and we had to take her back to the hospital Thursday morning. Later that day the doctor recommended we pull Sarah’s next chemotherapy block in from next Wednesday and start the 6 days of chemo on Friday. We were a little disappointed that we were not going to spend the next week/weekend with Sarah at home, but agreed that proceeding as soon as possible was best. The longer Sarah has this strain of Leukemia, the more opportunity it has to mutate into a more resistant strain.

As it turned out, Sarah had a fever all day Friday, so we don't start chemo until Saturday afternoon. Susan and I worked out the schedule for next week regarding who would stay with Sarah at the hospital and who would be at home. Susan wants to be at the hospital the entire week. With Susan being due to deliver within 5 weeks and the other children’s needs, I’m not sure her staying the entire week would be best. We’ll talk about it a little more.

The doctors are starting to talk to us about “hard” dates for admitting Sarah at Boston Children’s Hospital. End of July/Beginning of August was what we heard today. We’ll probably visit the Boston team by end of next week. I’ll post more on that when we hear.

Susan and I are a little worried about the effects of the chemotherapy injected in Sarah’s spine. Maybe it’s our imagination, but she seems to be “not quite right” since her last spinal chemo treatment on Wednesday. Please pray she will not have any lasting effects from this treatment specifically.
-Romans 8:37-39

When it Rains it Pours

Sarah has been home with us since last Thursday (6 days). She is doing great and has enough energy to move around and play some with her brothers and sisters. She doesn't walk very well, more of a shuffle/hobble. She takes a small amount of Tylenol w/codeine for muscle and joint pain (it makes a huge difference). Hair is going fast, but some is hanging in there.

We visited the doctor's today to have her blood counts checked and discuss the next steps in her therapy. She did have some chemo treatment in her spine today (read spinal tap). The good news..., Her blood counts looked good. The bad news..., Since her blood counts look good she is ready for more chemotherapy. She goes back to thehospital for the chemo next Wednesday (6/18). Thankfully, she will spend this next week at home with her family. We are so excited about having her home (and in good spirits) with very little meds until next Wednesday (now that is a gift)!!

Sarah has to go through one and maybe two "blocks" of chemotherapy before she begins the bone marrow transplant phase. The doctor's tell us this is normal and expected and that things are still moving along in a positive way. The one block of chemotherapy we know she needs will be for 6 straight days. Sarah has to be in the hospital for observation the entire 6 days. The hospital stay is required since the drugs will be an entirely new set and she may respond badly. Something else new..., we will be giving Sarah daily injections of a growth factor at home starting on the sixth day to boost her blood cell recovery. The block ends 3 weeks later with a bone marrow biopsy to check her status and blood cell counts.

If the doctor's are pleased with her response to the first block, then we can move into the bone marrow transplant (BMT) phase. We're not looking forward to the BMT, but we do want to go into and out of the BMT phase as soon as possible.

So, it looks like another several weeks of uncertainty and "going with the flow". Did I mention that Susan is due to deliver baby #9 in 5 weeks? We better wrap up the naming process pretty quick.
-Song of Solomon 2:10-12

The upper right image is Sarah at the hospital today waiting to see the doctor.
The upper left image is Sarah resting after her spinal chemo treatment today.

It's Good to be Home

Sarah came home Thursday. We brought her in the door and laid her sick little body on the couch. She was quiet for a while and then it started. The smiling, laughing, and then talking. Our sweet little girl came back to us and the transformation was remarkable. While in the hospital Sarah was extremely quiet and withdrawn. She would go through an entire day and say only a sentence or two. Never responding to the doctors and nurses and often not even her mom and dad. Home and family have been good medicine for her.

We take her back to the hospital on Wednesday for another spinal tap and bone marrow aspiration to determine if she is ready for the next step in her treatment. We are hoping that after next Wednesday we will be told it's time to transfer her care to Boston to prepare for the transplant. But of course we have no idea how soon that will or will not happen.

She has had a little vacation from all her medicines in order to give her body a chance to recover some white blood cells and the special neutrophils she needs to fight infection. While we were glad she didn't need to take any drugs, the withdrawal from the prednisone has given her terrible pains in her legs. So much so that she doesn't want to move around nor even walk to the bathroom herself. Tomorrow we'll be trying Tylenol with codeine.
-Susan

Day 29 - Over Another Hurdle

The doctor told us that Sarah's bone marrow biopsy testing confirmed yesterdays initial results. Sarah's bone marrow is "empty" of the Leukemia blasts. She still has Leukemia within her body, but at a very low level. Now we wait for her bone marrow to recover and we prepare to talk with the folks in Boston regarding the bone marrow transplant. Awesome news.

To pile on even more good news, Sarah is going home from the hospital tomorrow!

It's hard to believe we would receive so much good news in one day. Today was a good day.

So much to be grateful for.
-Psalm 18:28-31

Day 28 - Almost out of Induction

Today was a big day for Sarah. It was day 28 in her induction therapy intended to bring her leukemia into remission. She had a bone marrow aspiration to determine if she had reached bone marrow remission.

The initial results were good with her bone marrow basically being "empty". Her "empty" bone marrow means she has no signs of cancer cells (or neutrophils) in her bone marrow. This was a quick preliminary assessment to determine if a rapid change in chemotherapy should be considered. Tomorrow afternoon we learn more definitively the state of her bone marrow from a bone marrow biopsy test that was initiated today. The doctor told us not to celebrate today and wait to see what we get from the biopsy tomorrow. The doctor did say she expects we will see cancer cell counts that are close to the definition of remission.

Provided the results we heard today hold after the biopsy results are in tomorrow, then Sarah comes off chemotherapy/Gleevec and her body is allowed to rebuild her neutrophil count. Once the neutrophil count gets high enough (>500) then Sarah can come home again before her bone marrow transplant.

Sarah was very tired this afternoon and her hair sort of comes out in your hand if you brush your fingers through it. I like to think of this as an outward sign of the drugs doing their job. Maybe one day, drugs like this will not be needed to treat Leukemia.

We really felt good about the news today and are very thankful for every ones help and prayers. A few more prayers and I will post the learning's from tomorrow late in the evening.
-Psalm 62:7-8