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

Day 26 - Back in the Hospital

We're back in the hospital. Sarah developed a fever of ~101.5F midday Thursday, so back to the hospital we went.

Sarah's team of doctors told us the fever and the approximate stage of treatment she developed the fever was not unexpected. They also said we should expect Sarah to be in the hospital for a couple of weeks. To be able to leave the hospital, Sarah's neutrophil count will need to rise to >500. Susan and I have worked out a schedule for who stays with Sarah at the hospital and when. When I say schedule, I mean something we wrote on the whiteboard. We are learning a new meaning for the words scheduling, planning and routine.

Sarah is doing pretty good today with no fever and she enjoyed a nice visit with her brother Michael this afternoon. She was animated, smiled and talked some. She's not like that much anymore so it felt good to see. Her hair is starting to fall out more heavily now and she is getting a little heavy from the steroids.

Sarah's next scheduled chemo treatment is next Tuesday. The doctors will be analyzing her bone marrow and determining if she has reached remission then too. The three possible outcomes from next Tuesday are:
1. Remission - Sarah comes off chemo for a while before radiation/BMT.
2. Close to remission - Sarah stays on her current chemotherapy recipe for a little longer then reaches remission.
3. Not close to remission - Sarah begins a new more aggressive chemotherapy regimen with possibly uglier side effects.

We'd really appreciate your praying for outcome #1 above. I must say God is making us nervous, but we are still with him because we know he is with us.
-Deuteronomy 20:1-4

Day 23 - Hurry Up and Wait

Susan and her dad took Sarah to the hospital yesterday for her weekly round of chemotherapy. We will not hear any news regarding remission until after her next visit. It's a little frustrating, but we hear what we hear, when we hear it. Susan and I feel pretty good about Sarah's doctors and really appreciate their approach and abilities.

Sarah had a pretty rough start today and it really did not pick up as the day went by. She had one new drug added to her chemotherapy recipe and we think it moved her nausea up from mild to moderate. She wasn't able to hold her breakfast down this morning and didn't want to eat today. We are hoping the effects of the new drug will wear off as the week progresses. We are going to be transitioning Sarah from Tylenol to Tylenol w/Codeine for pain management tomorrow. Her pain is still pretty solid.

Susan's sister has been staying with us to help out over the last few weeks. While she has been a very big help, Susan and I think she should return home soon to be with her husband and son while we have a "lull" away from the hospital. We are hopeful she will be able to come back after Sarah enters radiation/bone marrow transplantation therapy.

Our other children had a really good day though. They managed to get some home schooling in and were helpful to Susan and each other. One of Susan's friends brought dinner over (again) too.
-John 14:16-18

Photo on above is of Sarah w/her mom at the park on Day 21.

Day 21 - No Walk in the Park

Sarah's last few days have been tough. She has been very tired and sad a lot. She has had a good bit of joint and back pain. Cried in the morning, cried in the afternoon and cried in the evening. We don't know if this is specifically due to her low red blood cell count or other chemotherapy related side effects. The Tylenol we treat her with helps a little. We think her hair is starting to fall out a little more noticeably now. The hair falling out doesn't bother Susan and me much when viewed relative to more serious potential side effects.

We took Sarah to the park today so she could get a little sun and not lay on the couch/bed all day long. Maybe a little change of scenery and surroundings would lift her up a little. She fell down as soon as we got to the park and was not interested in anything except crying after that. Sarah's evening did pick up after a nap when we returned from the park. She smiled, talked a good amount and actually laughed a little. We are learning to call that a good day. Actually, we easily find things to be grateful for every day. Maybe we look for them more than we did before Sarah's illness.

Due to Sarah's chemotherapy, she is neutropenic (abnormally low # of neutrophils). Neutrophils are white blood cells that fight bacterial infection. The doctors tell us that we need to avoid public places that might result in some form of bacterial infection. Maybe we should steer clear of the park and stick to the front yard next time.

And, as it turns out, Betsy and John will not need to be isolated after the vaccinations in preparation for donating bone marrow. The suggested isolation was a false alarm that Sarah's doctor later recanted. Man were we glad to hear that. Sarah's grandparents were relieved that the two BM donors didn't need to be isolated too (they were going to be isolated with them in their RV for 3 weeks).

I think Sarah's next hurdle is achieving remission so she can move onto preparing for the bone marrow transplant. We'll share more details on Sarah's remission status on the next posting.

I would like to say that I am not able to bring to mind the number of folks that have offered and provided support in countless ways to our family. It has a deepening and enriching effect on your faith. I am thankful for God's mercies.
-Lamentations 3:22-24

Useful Web Link:
http://en.wikipedia.org/wiki/Neutropenia

Day 17 - Vaccinations

Ben asked me to write for him today since he's tired. Sarah had a hard day today. She just didn't feel good and didn't have any energy. This morning after breakfast she had a short crying spell and complained that her legs and throat hurt so Katie and I took turns cuddling up with her on the couch and that's pretty much where she stayed all day, except for meals. Guess that's the steroids. The steroids make her feel weird. While taking her potty this afternoon she told me she was scared and then she said, "Mama, I don't like to be scared." Poor thing! When she acts like this we just hold her, comfort her, and wait for it to pass, and it does after a few minutes. We don't ask any questions and try not to make a big deal out of it, although sometimes distraction with a book or a toy does work really well.

Tomorrow is going to be a long day. Sarah, Betsy, and John all need to go up to DHMC. Sarah is going to get another transfusion (this will be the fourth) and Betsy and John will be getting some vaccines. The theory behind the vaccines is that some immunity will be transferred to Sarah with the BMT and since we don't know which of them will be the donor they are both getting them. I hate the whole vaccine thing but don't really see any way around it. Betsy and John will also need to be "isolated" from Sarah for several weeks. We'll share more about that after our visit to the hospital Friday.

-Zephaniah 3:12-19

Day 16 - Bone Marrow Donor Found

This afternoon Sarah's doctors told Susan that two of our children are bone marrow matches for her bone marrow transplant. The two matching children (and the rest of us) were pretty excited to hear this very positive news.

Sarah has a very long way to go, but today we feel blessed. We feel like we were given a gift.

-Psalms 130:1-8

The image to the right is Sarah and her sister Katie taking a walk on the hospital grounds.

Day 15 - New Drug Added

We headed back to the hospital today for Sarah's 3rd round of chemotherapy. She recieved chemotherapy via a spinal tap and intravenously through her "picc" line. Some bone marrow was also sampled to evaluate the chemo treatment effectiveness. Sarah was anesthesized for these procedures so she felt absolutely no pain.

Bone Marrow Donor Update:
Sarah's doctor said the initial test results for one of our children being a bone marrow donor looked promising. The doctor said a "couple of them" looked hopeful. He stopped short of saying one was a match until the final test results come in over the next couple of days. Hopeful news...
I'll post the results of the childrens bone marrow match testing as soon as we hear more.

New Drug Added:
Another drug will be added to Sarah's daily regimen starting Friday (Day 18), "Imatinib" also known as "Gleevec". The drug is primarily intended for chronic myelogenous leukemia (CML), but it works for her specific subtype of leukemia too (PH+ALL). The drug was added since the leukemia cell count in her bone marrow has not sufficiently reduced (below 5% of diagnosed levels) with the current regimen. The goal is to get Sarah into remission in preperation for a bone marrow transplant.

In general, Sarah is doing pretty good at home. Still no "difficult" side effects from the chemo treatment and we are having no trouble finding plenty of things to be thankful for. While Susan and I are having high and low moments, we still love and have faith in the lord.
-1 Cor 13:12

Informative websites:
http://www.childrenshospital.org/az/Site759/mainpageS759P0.html
http://en.wikipedia.org/wiki/Imatinib

First Day Home

Sarah made it home from the hospital last night around 5:00pm. She is eating really good. The doctors told us she would have a strong appetite due to the steroids used to fight her cancer. She is not eager to drink fluids, but we are making sure she is hydrated (a few potatoe chips make her thirsty).

Still no crushing side effects from the chemotherapy. We're guessing she'll stay out of the hospital for 6 weeks minimum unless she develops a fever (>100.4F) or bleeding in some manner that can't be stopped within 5-10 minutes. If she experiences difficulties at home, then we're back in the hospital. We'll be working diligently to prevent the above difficulties so she can be with her family for as long as possible.

Going Home

Sarah's basic treatment involves:
- Chemotherapy
- Whole body radiation
- Bone marrow transplantation

Sarah's sisters, brothers and Susan and I are being tested as potential bone marrow donors. We are also going to be collecting cord blood from the delivery of our next child in mid-July for possible stem cell transplantation.

The hospital staff trained Susan and I to maintain Sarah's PICC line today. We were also brought up to speed on what "blood count" means and what part of it is important with Sarah's form of Leukemia.

Susan and I are really excited because it looks like Sarah will be going home from the hospital tomorrow. A little normalcy for Sarah (and our family) for a short while. One more bit of grace to be grateful for. Thank you Lord.

-Isaiah 48:17

Diagnosis Day

Sarah (age 3-1/2) was diagnosed with Leukemia on 5/04/08. She has a rare form of Leukemia called Philadelphia Chromosome Acute Lymphocytic Leukemia (PH+ ALL). Due to this she's being treated with intensive chemotherapy to be followed fairly soon with radiation and bone marrow transplantation.

We are learning something new everyday and now realize that our old way of living is gone. While we desperately want Sarah to be the same as she was before, we are grateful for Sarah's positive response to the chemotherapy and what God is giving us everyday.