Pain Meds to the Rescue

Yeah for pain medication. The morphine drip started late last night and at 4AM, Erica was ready to play. I had to break the bad news to her that "play time" would need to wait for another two hours. She negotiated, and we were playing with stickers at 5:30AM.

Today was good just for the fact that she was not in pain. She ate 1/2 of her yogurt and was able to keep it down. The docs were very happy about that. Her favorite new game is "Where is pointer" which must be played with Nana and Erica is in charge of which colors go on the "pointer" finger. The world record was broken yesterday as Nana sat and sang for two and a half hours!

The concern about her liver has popped back up as her bilirubin is creeping up. We'll know more tomorrow, please pray for normal results!

A Period of Discomfort

I'll start by saying that this is all expected . . . Erica has more and more side effects of the radiation and chemo, only exacerbated by the extremely low blood counts. She now has sores inside her mouth, these also exist down her throat and into her stomach. Needless to say, she is not eating and even though we understand why, it is hard. Erica's eyes are also really bothering her, she was itching them constantly, causing bruising, but we started her on an ointment that goes onto and in her eyes every couple of hours. It seems like this ointment has helped a bit. More than anything, she is comforted by the morphine. This afternoon they will start her on a constant morphine drip.

Again, it is all expected . . . and then some. So we're here, in the thick of it! I think that many people may think that the actual transplant is the big hurdle but in reality, it is the recovery process. So far, no fever, although that is also expected. A little fever would signify a little GVHD (graft versus host disease) and this is a good thing as it represents a successful transplant and an even more serious attack on the the leukemia cells (if there are any left).

Prayers are for her eyes, that they stop itching; for her mouth and throat, that she is able to be comforted; for her engraftment, that it happens very soon.

God Bless.

Day 5

Today things shifted a bit, Erica is not feeling well and the energy in the room has declined accordingly. This is the type of shift that we all expected, it is just hard to see. She will play for about an hour and then nap for an hour. Today she ate about 1/3 of a yogurt and about 5 bites of cheese. The dietitian told us to push protein calories as much as possible.

No matter how many times I've been told that she will get sick, it's still hard. She's already lost some weight and the skin around her eyes is red . . . but her baby blues are still charged with spirit and joy.

Today I was talking with a friend about what life would be like when Erica is all better. I can only imagine watching her run with other kids and, heaven forbid, getting dirty. I can only imagine seeing her little body without tubes coming from her chest or waking up in the morning without taking her temperature or checking her blood sugar. I know that there will be other meds, hormone injections and doctors visits, but there will also be more living and less worry, more good days and less bad ones. I am not the one with cancer here, but I can imagine that this type of thought process goes on with other patients . . . the wonderment of life without the disease.

I am a big believer in creating the vision you want for your life and holding that vision as a motivating factor in your behavior and decision making. I hold a vision for our family; it is filled with play and exploration, learning, love and faith. In many ways, however, we will never be far from this experience, at least I hope not, because of all things . . . THIS is what opened our eyes to the power of prayer, to the generosity of the human spirit, to the wonderment of the medical sciences, to the strength of a child, to the sanctity of friendship, to the devotion of family and to the absolute possibility of miracles. I don't want to be rid of the many lessons cancer has revealed to us, just the cancer.

Hair

Erica has completely lost her hair about five times over the past 14 months. The first time it grew back it was red, even her eyebrows were red; the second time her hair was dark brown and thick, her eyebrows looked like mine did when I was in high-school. There have been all different colors and textures and so I've always been interested to see where we'd end up. Well, I think she is loosing her hair for the last time. Each morning the bed is covered in hair and there is one more big bald patch on her head. This time, even her eyebrows and eyelashes look to be falling out. It was a powerful blast of radiation and chemo, so I am not surprised.

In the big scheme of things, hair isn't that big of a deal . . . all things considered. It's just that it is so representative of cancer and it can be a metaphor for killing cancer cells and then, as the hair grows back, the healthy cells emerge in victory!

Erica is slowing down a bit. Today she is getting platelets and red blood cell transfusions. Her counts are at zero and she has no immune system. She got sick this morning and she has absolutely no interest in eating but she is reading her books and is now a puzzle expert.

Bob and I are in a good routine. We have are weekday and weekend schedules and it helps to make this whole hospital stay as "normal" as possible. My mom, "nana", comes to the hospital almost every day, while Bob is at work, and so that I can get a break. All of our hospital experience is paying off . . . we know where to get the best food, the best ice (yes there are different ice machines), the cleanest microwaves, vending machines, who to go to for baby supplies, etc.

Sometimes I think about life on the outside . . . what would we be doing if we weren't fighting cancer? It's a bit of day dream but I always come back to the feeling that this is exactly what was supposed to happen, a feeling of purpose for all of us. There are many ways in which we are renewed by this experience.

Prayers today are for Erica's appetite, energy, and for protection against infection and disease.

With love and grace.

What just happened?

It's just still hard to believe that the transplant took place. All day I've been thinking about the months leading up to the transplant, all of the chemo and tests and now here we are . . . the actual transplant is over and this is officially the road to recovery. All we have now is healing.

We keep asking Erica, "how is your new marrow doing?" She just looks at us and smiles. The photo above is the actually bone marrow as it is being infused into Erica's body. There were 3 bags of marrow, infused over the five hours. Isn't it beautiful!

As you can see from the picture of Erica, she is certainly puffy. That is the side effect to the steroids and all of the fluids. Graft Versus Host Disease (GVHD) can also cause a bit of this puffiness. We want a tiny bit of GVHD, but no more than that! So far, there are no other signs of disease or infection. Erica is happy and playful, she is still dancing! She will continue to get the anti-rejection medications and a bit of chemo to keep her system from coming back too fast . . . it's a fine line. Right now Erica's counts are at zero; no white blood cells, no active immune system. So, again, it is day to day, and the prayer is that she continues to eat on her own and keep her spirits high.

In health.

Day Zero

The infusion of bone marrow began at 3AM and came in 3 separate doses, the transplant was complete at 8:30AM. The nurses sang "Happy Birthday" and we said a prayer for her new marrow to be welcomed into her body . . . a ceremony of sorts!

Erica is doing fine. Being that a bone marrow transplant is not a surgery, it can be a bit "boring" in the actual procedure. Erica was awake, laying right beside me the whole time. We sang, we napped, we even watched Barney. When it was all done, we took a long snooze and smiled as we dreamed about all of the healing that is about to take place. This is a long road, to say the least. The radiation, the chemo, the pre-meds, the transplant, and now the period called engraftment. This next phases can take 20-40 days. We will not be going home until her blood counts show that engraftment of the new bone marrow has taken place.

Today was the first day that Erica cried and cried as she was reaching for the door to the room. It was as though she knew that she got her new marrow and thought, "ok, it's time to go!" We introduced some new books and tried to keep her busy so that she wouldn't focus so much on going out . . . just 30 days to go!

In the days to come, the expectation is that she will start feeling very sick . . . all the things that I have mentioned in past blogs. We can hope, and pray, that she skates though . . . never hurts to ask. I'll keep you posted.

Much love and gratitude!

Transplant

Thank you for all of your prayers!

It is now 11:30 PM on the 22nd and we just got word that the bone marrow is on it's way. There was a flight delay so the actual transplant has been pushed to 1AM on 1/23. Erica is sleeping now but there will soon be a lot of action in this room; they will hook her up to the monitors and run some tests, she will be given more anti-rejection medications and some anti-nausea meds. Dr. Taylor will be here shortly and he and the nurse, Karen, will be by Erica through the infusion.

Once the marrow is infused we will all get some sleep and then, in the days to come, she will be closely monitored. She will stay on all of the medications and her counts will actually continue to drop. Everyday her blood will be tested and the prayer will be for signs of engraftment. This site helps to explain what we will be going though in the next few weeks:
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/index.html

Tonight will be a long night, a good night. All will be peaceful as the new stem cells are infused into Erica's body. I keep thinking about Erica being the Light the Night honoree and I imagine the number of candles that are burning for Erica tonight . . . I just love the metaphor of Light, it offers the feeling of Hope and Energy and Life.

Goodnight.

Dear God

Dear God, today we pray for a miracle, your healing miracle.

Today we pray for comfort on Erica's donor, that his surgery go well and that his recovery be brief. We pray for his strength and for his peace of mind, knowing that he is saving a precious life.

Today we pray for the courier, the one who will transport Erica's new bone marrow, potentially over hundreds of miles. We pray for this persons safety and speed.

Lord, today we pray for the doctors and nurses that will surround Erica. They will give her dozens of medications and then, tonight they will hang her new and beautiful marrow in a bag and they will start the infusion . . . our miracle at work. Bless them with gratitude for the work that they do, for their loving hearts and caring hands.

Today we pray that you surround Erica with your healing power. Protect her heart, her liver, her kidneys, her lungs, protect every organ and system within her body, that it sustains the process that it must go through in oder to be given, again, the gift of life.

You are our miraculous God and we know that ALL things are possible through You. We ask You today, on bended knee, to hold Erica through the healing process, to lay the new cells where they belong and to keep her free from infection and disease. Keep her comfortable and keep her spirit strong.

Guide us, hold us, give us strength when we are feeling weak and tired and helpless; restore our faith when fear gets the best of us.

For the miracle that is about to take place, we thank you. Thank you for healing our little girl, thank you for her donor, for the doctors and thank you for all of the love that surrounds us.

Today we pray for a miracle.
Amen

Day -2

It is Sunday afternoon and we are sitting here playing. Erica is going crazy on her drums and we are listening to Brian Biehle's CD (fun kids music)! Yes, she is feeling good. She is still eating, in fact, last night she had a normal dinner and then cereal at 11PM. Her energy is good and she let's us know when she is sleepy.

Erica had an EKG this morning. Dr. Taylor is reviewing the results now and with a good report she will continue with the second/last dose of chemotherapy. Along with the chemo, she has already begun the anti-rejection medication. She has also started high-dose steroids and antibiotics. Yesterday they also started giving her blood pressure meds as her blood pressure was starting to creep up. Most of the meds are given via IV but she is also doing well with the 3 or 4 oral meds.

We are really all feeling good right now and our spirits are high. Yesterday I had the feeling that we were completely surrounded by light, thankful that we are experiencing so much comfort and support.

Chemo Weekend

TBI concluded on Friday afternoon. I couldn't help myself from crying as we were wheeled back onto the transport bus. I am not even sure why I was so weepy; on one hand I couldn't believe what her little body had just gone through and on the other hand, I knew that we were one step closer to her feeling very ill. Either way, she made it through the week of TBI with flying colors. One nurse said that she had never seen a patient jumping up and down and clapping after 8 rounds of TBI. That's our girl!

Next Step-Chemo. Saturday and Sunday are HIGH-dose chemo days. I found out that the dose that she is getting is 3 times stronger than when she had Cytoxin in the past. The purpose of this chemo is to take her current bone marrow; to eradicate the marrow and any lingering cancer. Erica will most likely be very sick for the next several days. The things that we have been warned about include mouth sores, stomach sores, skin breakdown (much like she had about one year ago), vomiting, lack of appetite, and weakness. We'll just need to see how Erica does, we know that every patient is different . . . our hope is that she feels better than expected.

Thank you for your prayers!

Go Time-TBI

Yesterday was the first day of Total Body Irradiation and it was quite different from the four days of cranial radiation. They took Erica into the room after she had been put under; just her diaper on, and then placed her on a steel plate on the floor. There was a warm blanket under her for comfort. Then, they placed her head, turned to the side, and taped her head down. Next, they placed a clear box over her body. On top of the box they placed two steel pieces (they look like teeny-tiny pork chops) on top of the box and overlapping where Erica's lungs are; this protects her lungs from the fraction. Yes, it was very hard to see . . . and on the other hand, we know exactly what she is going through and we know that she is in good hands. About a half hour after the radiation, Erica was vomiting like crazy, "here we go" is all I could think.

We got over to the hospital and checked into our room on the 8th floor. It is a nice room with a crib for Erica and a bed for me. There is a little table and even some floor space for Erica to play. We were able to get some anti-nausea meds for Erica and she finally stopped throwing up. TBI is harsh! We met our new primary nurse, Barb, and she is great! She sat and talked with us for quite awhile about what to expect, which was helpful. The nursing staff on this floor is great and I think that we will all be well taken care of.

With the anti-nausea medication, Erica is doing well. She has five more fractions of radiation to go and then two days of very high-dose chemotherapy. This will essentially kill her current bone marrow so that her body can accept the new marrow . . . which will arrive on the 22nd. For now, her spirits are great and she just doesn't understand why she can't leave the room and play! We're trying to make the room fun, we have some new toys and Barney DVDs, books and music to keep her (us) busy!

We'll continue to keep you posted. Thank you for your prayers!

Day -11

Erica has now completed 3 days of cranial radiation. The treatments went well and she has made at least six new friends in the radiology clinic at the UC Davis Cancer Center. Every morning we show up at the cancer center at about 6:50AM, by 7AM Erica is "asleep" and by 7:30AM we are notified that she is in the recovery room . . . and as soon as she wakes up, she tells us that she is ready to eat! The staff all laugh and watch as we give Erica her "wheats" (Cream of Wheat). It is usually 8AM by the time we leave and we take a deep breath as we are one day closer to the transplant.

The audiology tests and neuro-psych evaluations were also completed this week. We are now done with all of the pre-transplant tests. Erica was infused with immunoglobulins today; these are antibodies that come from white blood cells that will help Erica's immune system . . . in the absence of an immune system (if that makes sense?). The goal is to prevent any type of infection as we enter into transplant week.

The plan for the weekend is to prepare for the hospital admission, which will take place on Tuesday, the 15th. Part of the preparation is to wash all of the toys and linens that we will be taking to the hospital as well as storing those that will not be "safe" when she gets home.

I would describe the feeling right now to be one of anticipation . . . this is what Erica needs to go through in order to be healthy, so we are ready and even excited that this option is available to her. There are a lot of unknowns which can lead to apprehension . . . this is when we pray! We are enjoying every moment at home, she is feeling really good and she is laughing (big belly laughs) a lot. When she is sleeping, sometimes we just go in and stare are her; "it's not fair" we'll say, and then we'll remind each other about a passage that we read from our daily devotional, "I consider that our present sufferings are not worth comparing with the glory that will be revealed to us." (Romans 8:18).

and more tests . . .

We have had a very busy week of pre-radiation tests. All of Erica's organs have been evaluated. This morning she went through a radio-active test called a GFR and she was a champion. They were going to put her under anaesthesia but because she has a reputation of holding still during ultra-sounds, they gave her the opportunity to prove herself during this 30 minute procedure . . . and she did a great job. They wrapped her up in the yellow bean bag (pictured above) and her job was to stay still the entire time. We'll get the results soon but everything looked good initially.

Our nieces, brother and sister-in-law were in town for a few days and we had such an amazing time! These girls are so much fun, I just wish Erica could be around them more often! I can tell that, even if there are miles between them, these cousins will be super close. As a Christmas gift we all went to the day spa for manicures and pedicures . . . white robes and all!

Tomorrow is the first day of the cranial radiation. Please keep Erica in your prayers, that the radiation goes to all parts of her cranium that it needs to go and that God protects all the parts of her brain that needs to be protected.

BMT Conditioning

This is the first week of radiation. On Monday we will go in for the radiation simulation; this is where she will literally go through all of the radiation procedures without actually receiving the radiation. The reason for this is that they need to prepare; they will create the soft plastic mask that will cover her face during the fractions as well as the breast plate used to protect her lungs. Once they have completed these two shields, they will measure the fields of radiation so that everything is prepped for the 8 days of radiation. Erica will receive 4 days of cranial-radiation and 4 days of TBI (total body irradiation). The radiation and the subsequent chemo is considered the "conditioning phase" of the BMT.

We were given some news the other night that was surprisingly touching. We had been asking our nurse coordinator (almost daily) for information about the donor. We knew that there was a lot of information that could not be shared, but wow . . . just knowing something felt like it would help as we try to get a vision for this transplant. Also, who were we praying for, a male, female, how old . . . where? One question would lead to another. Well, we got a couple of answerers. Erica's bone marrow donor is a 25 year old male.

This could not be better news. We needed a male and a young male was icing on the cake! I won't get into why these unrelated donor demographics are better than any others, just know that this is answered prayer. This young man has a A+ blood type which means that when Erica is done, she will no longer be O+, she too will be A+. I pray for this guy every night, that he has been chosen to give Erica life is beyond a mother's imagination. There is nothing Bob and I wouldn't do for Erica and yet, giving her our marrow was not an option . . . or what about the hundreds of others who know her and would donate to her? And yet, there is this young man that we have never met, who, for what ever reason, became a donor, and he is her hero!

Those are the only pieces on information we have on the donor; gender, age and blood type. Oh, and I also know that he is being harvested on the 22nd. So, where ever he is in this world, his bone marrow will be harvested and transplanted all in one day! January 22nd!

Tonight I just want to say, God Bless this young man, Erica's hero!

Healing in 2008

Happy New Year! We welcome the new year with 3 words~Hope, Health and Happiness! Cheers to you and yours, we wish the same to you!

We have been home through the holidays which has been great. Erica has been cruising all around and we can tell that she is getting stronger with each day. My hope is that she will walk on her own before the transplant . . . but we'll see.

Today was the beginning of the transplant preparation. We can consider this "day -20". So the countdown has officially begun. Today we met with the radiology oncologist, then hit the infusion room for anti-nausea meds and then to the surgery center for a spinal tap and bone marrow aspiration. The bone marrow was rough, the doc had to go in 5 times to get a good biopsy. Then, in the middle of the surgery Erica's respiration dropped and they had to open her airway and stop the procedure. It was scary but nothing to worry about in the long run. She is going to be very sore for the next few days, the site has collected a lot of blood. We have a pressure bandage on it now and all will be well in a couple of days.

When we left the infusion room and surgery center today, all of our nurses and all of the patient families that we have come to know gave us hugs and wished us Good Luck. There were a lot of well wishes and thumbs up . . . it was very emotional. It felt official, like, "here we go" and all of these people will be thinking about and praying for Erica. I made sure that everyone knew the date, January 22nd!

Friday is the EKG, Echocardiogram, and liver biopsy. Also, our family from Michigan is in town, Bob's brother, sister-in-law and our 3 nieces. We'll get to spend some time with them which we have been looking forward to for quite some time! It is perfect timing as this is really the last week that Erica can have visitors.

As you can see from the picture, Erica is back on steroids . . . how else could you get cheeks like that!

Love!