Bone Marrow Transplant


Back in 2008, I met a dear friend while taking a ride in the Children’s Hospital elevator in Seattle, WA.  Josie looked me directly in the eye and said, “Bone Marrow Transplant.”

I answered, “Yes.  How did you know?”

She was with her daughter Kelli.  Josie told me that she was in my shoes the prior year.  Kelli had survived and was back for her “year 1” doctors appointments.  Josie and Kelli have continued to inspire me to put one foot in front of the other when I felt I couldn’t.  I am so thankful that my loving Savior brought them to me.

Josie asked if Lydia could be a part of her fundraiser this year, “Faces of Hope.”  She has had made an inspirational quilt and I could not be happier for my daughter to be a part of it.

Here is Josie’s letter and photo of the quilt:

This year we celebrate many milestones with our childhood cancer survivors.  We are featuring TWELVE of our warriors on a quilt with all proceeds going to RELAY FOR LIFE and the AMERICAN CANCER SOCIETY.

We have put together a quilt in honor of these kids and are taking donations to benefit the AMERICAN CANCER SOCIETY and Relay For Life.  For every dollar donated we will put your name in a drawing for this one of a kind quilt.

We will be drawing the winner on March 15, 2012.

We will also be drawing for a crocheted afghan in the colors of purple and white.

We understand that with the tough economic times that some people will not be able to donate and that is ok.  If you could pass this on to someone you know that might be willing to donate even a little bit, that would be appreciated.

Every dollar we raise will go to help finding a cure for cancer.  If it were not for the researchers and the doctors and nurses, our children would not be alive today.   There is still more research to be done and we hope that every dollar we raise will bring us that much closer to a cure so that no other parent will ever have to hear the words “your child has cancer” and that no other child will have to endure what our children have gone through.

Thank you for supporting RELAY FOR LIFE and the AMERICAN CANCER SOCIETY.

Team For The Kids

** Checks may be made payable to : AMERICAN CANCER SOCIETY

You can mail your donation to:
Josie Ritter
8192 Harrington Lane NE
Moses Lake, WA 98837

I know, I know…still no picture.  Thankfully, if you wanted a picture blog you would be visualizing on some other website.  Today is my birthday, so maybe we will get some photos tonight, though the pink highlights aren’t as bright as they were before.

Have you ever walked into a trap that triggered an event in your life that cuts deeply and you were surprised by your reaction?  I had that experience when I took Lydia to the dentist a week and a half ago.  The particular dentist’s office is pleasant enough, but when I brought my three preschoolers for their appointment, Lydia was refused to be seen.  I was accused by the hygientist of not getting them a letter stating that she could be treated.  I don’t know what sent me into a spiral.  I understand that the doctor wanted to cover her bases on risk to treat her.  Maybe it was the stress of knowing that Lydia had cavities or it was the accusation of being a bad parent.  I don’t know.  You try to do your best, but that isn’t good enough.

They saw her last week, and told me that she did indeed have cavities and would need to have one day surgery at Children’s  Hospital to take care of it.  The only problem is that she doesn’t do surgery during the summer.

Grandparents are very good friends with a pediatric dentist in town, who use to teach at the school of dentistry.  He gave me a call after speaking to the Grans and was so wonderful to give me all of his phone numbers and said that we were family.  He saw Lydia the next day and agreed that she needed surgery and that it would be done as soon as possible.  She will get 4 crowns on August 3.  She will be worked in earlier if anyone cancels.  They go to Children’s every week, but right now they are booked.

Ok, so I knew that her teeth would have a weird side effect of her previous treatment,  but here are the specifics:  She has feeding issues.  You may remember that she was fed via a blood line or through a feeding tube for about 8 months of her baby life.  When she was bottle fed, I could give her a bottle while she was asleep to keep her hydrated if she did not get enough during her waking time.  Even then, she would refuse a bottle of water while she was asleep, but except milk.  I finally gave up these feedings and now when she goes to clinic she is most often dehydrated.  So much so that I am to do what it takes to make the girl drink.  I only offer her apple juice, milk, and water.  I have just started freshly pressing apples to get pure apple juice without citric acid or any sugar or anything to not hurt her teeth.    I am my wit’s end balancing how to take care of her fluid intake and her teeth.

In addition to all of this, she has GERD (acid reflux).  This too rots teeth.  The good news is that her enamel is growing normally!!!  That was a scare.  When she is put under she will get her first set of x-rays on her teeth.  I am hopeful that she has some adult tooth buds forming.  Because she had Total Body Irradiation so early in life they might not form…but there is HOPE.

Thank you for letting me share my frustration and prayer requests with you.  I am in a really good place, resting in the one day at a time aspect of life.  God gives peace thankfully.

 

Praise GOD!!! Lydia is still cancer free! She is doing as well or better than expected in all but one area!  They were thrilled with her motor skills (she WALKED in pushing her stroller).  She can’t walk unassisted yet, but it was huge that she is as strong as she is…and cute.  I dressed her in her pink tutu too.  She was a doll for them.  It was great seeing many of our Seattle friends…even our wonderful lab nurses (who stick babies for a living!)

The dietitian was pleased with her intake.  Lydia is quite the carnivore.  It would be great if she liked veggies, but her vitamin drops will do for now.  She is taking in enough calcium, but I have to make sure that it does not drop off.  I think it is because of the huge amount of radiation that she had.  Her bone growth looks great for now too!  She is to be weighed and measured every three months.  If the slightest slowdown of growth appears, she is to go to an endocrinologist for further investigation and growth hormones.  The radiation specifically effects growth hormones and thyroid.  We have to keep a close watch on her thyroid (which is normal for now) to keep this in check.

Her teeth look great.  I know this strange to be writing about, but there is a STRONG possibility that her adult teeth will not come in, therefore making her baby teeth her permanent teeth.  Only time will tell if any of these things affect her or not, but these are some of the many possibilities that patients like Lydia go through.

According to folklore, if the groundhog sees his shadow there is six more weeks of winter.  Apparently Dr. Woolfrey saw Lydia’s shadow and proclaimed six more months of winter!

Yes, Lydia should have a newborns immune system by now.  In fact when we spoke to the team on Tuesday, they gave us the green light to go have fun, take her out in public, be “normal”, but wash our hands.  When we returned for our  discharge meeting on Friday, Dr. Woolfrey had found a blip in Lydia’s numbers.  Apparently one part of her immune system showed up much lower than expected.  Her white blood count looks normal, but under this deep scrutiny of blood work a low value was found.

Lydia is 100% donor marrow and blood…YEA! But it is taking a long time for her immune system to build back.  Cord stem cells take longer than adult bone marrow donors in general.  Dr. Woolfrey and the team were not concerned about Lydia, just take it easy a little longer.

In fact, her restrictions have been lifted DRAMATICALLY!  They want her to be a “normal” girl.  She can go to the grocery store, the zoo, the playground (and play).  She can play with “well” kids.  She is able to start over with her baby shots now.

Her restrictions basically consist of the following:

  • No preschool for my sons
  • No Sunday school for any of my kids
  • No large playgroups
  • No playing with kids that are sick or have runny noses, stomach aches, etc.
  • No Sun (GVHD is still a real risk and because of the amount of radiation, it can easily produce sun cancer)
  • Wash hands often
  • Don’t let people touch her
  • Don’t play in the dirt or sandboxes
  • Be smart, if anyone seams sick leave immediately

If she gets a fever of 101 she has to be seen by a doctor immediately.  If not her oncologist, then an ER doc. 😦

The good news is NO CANCER!!!!  Six months is not bad in the scheme of things.

They said that her skin looked pristine.  I cringed a little, because that had been said right before she tested positive to GVHD(graft versus host disease) on a skin biopsy.  This time her skin biopsy was CLEAR!  The only hint of GVHD is on her scalp…she has a small flaky bald spot.  It was swabbed for fungus, but that came back clear, so it is guessed to be GVHD.  This will be treated with prescription dandruff shampoo.  If that doesn’t work then a special lotion will be applied.

This will not stop us from tapering her final immune suppressant!  The taper will begin tomorrow and end by August.  Pray for no GVHD to present itself as the new cells get use to her body.  It can take several years for the new cord to feel at home.

So I sobbed like a baby during our discharge summary.  I was so thrilled with the results.  Then an hour later, I sobbed like a baby, because I know the war is still on…and baby, she is fighting.  It is God’s strength, not her own.

As far as God’s strength goes, the Beam family is living on it now.  They truly NEED your prayers.  They lost there precious son Tucker who was fighting leukemia this morning.  Though He is now TRULY healed and in the Father’s arms, the mother’s arms miss him.  His life is a beautiful testimony of faithfulness and love for his KING.

The Brittain Family needs prayer for the Father’s strength as Megan needs more comfort.

Thank you for your faithfulness to pray for Lydia and our friends.  God is so strong and tender and loves these precious children so much.  Let there lives be for YOUR glory LORD.

Lydia is doing so well. Her cold never developed into an infection – Go White Blood Cells! I have been thankful that she is on an antibiotic twice a week that helps keep infections away. Both David and my younger son developed sinus infections, but the rest of us have been fine.

Wednesday, I took Lydia to see her oncologist. Her counts continue to stay normal…despite fighting the cold. I am pleased beyond words. She had gained a pound and grew an inch. She is between 5-10th percentile for both height and weight. I was starting to get nervous about our trip to Seattle. You know the questions that can drive you really nuts like: what will they find? Will this change our lives yet again? Will they let us come home? Thankfully our doctor set me straight. She said that they are going to find a healthy little girl.

I met with my shrink (psychologist) while we were in clinic. She is such a lovely lady. Me, being the people pleaser that I am, asked her if I was doing OK. Yeah, yeah, I realize that most shrinks ask the patient how they are doing, not the other way around. And she thinks I’m sane? What’s that about? 😉

Lydia is scheduled to have tubes in her ears on June 4th (the week we return from Seattle). I get so frustrated when filling out pre-surgery questionnaires. I was asked “does she have a bleeding problem?” I am dumbfounded every time I hear that question. I responded that “she had leukemia. Did you know she had leukemia?” “Oh, yes maam. So, er, does that mean she had a blood transfusion?” Uh YES! Like a gagillion AND a bone marrow transplant. The blood in her body belongs to someone else. As a friend, said to me, that really should be highlighted on the outside of her file.

By the way, If your child is ever scheduled for surgery and they point blank tell you that the patient can’t eat or drink after midnight. Ask them to be more specific. Midnight is of course very specific, but this was the first time I had ever been told midnight without more information. Like Lydia can have clear liquids until 6AM with this particular surgery/anaesthesia. I had to ask the right question to get all of the information. If we hadn’t gone through so many general anaesthesia I wouldn’t have had a clue.

So Saturday we begin our trek to Seattle. Sally and two grandmothers are staying at home with my sons. David, Lydia, and I will arrive Saturday evening, but have Sunday and Monday as play days. I was trying to arrange getting together with some other survivors (that are now 4), but we will have to try that next year. So instead, I spoke with a friend that helped put a plan together to go to Mount Rainier! We are spending Sunday night at Paradise Inn right on the park grounds. I can’t wait to enjoy the views and take it easy.

Then on Tuesday at 7:15AM the appointments begin. They are stacked tightly. Lydia will be exhausted…and hungry. She has to fast two days in a row. She is tough, tough as nails. I can’t wait to see the friends we made last year.

I am not going to take my computer with me (my laptop went kaput). I am going to send out mini updates on my twitter account via my cell phone. You can view those updates on my sidebar to the right on my website. If you get my updates via email, the twitter updates will not be emailed. I am sorry for this. If you need to contact me for any reason call David or my cellphone OR you can direct message me on the Twitter site…those will come to my cell phone. My twitter name is leapnlizzie (surprise, surprise).

LORD, I pray and beg that Lydia is still cancer-free and completely healthy.

When I was in middle school, my sister Sally and I moved in with my dear grandparents Blanche and W.H. lovingly referred to as Mama B and Papa Shorty.  Mama B was a wonderful influence in my life.  She taught me by the way she lived:  to the pure all things are pure. Life was to be lived to the fullest.  Her love for family was intense and her love for community evident.  God blessed the works of her hands in her own children and in the children she taught.

Mama B could think like a child.  She taught me to short sheet a bed.  Yes, Ms. Benson, much of Amber, Allison and my camp shenanigans were by my dearest Mama B.  In fact, last night, mom and I had fun short sheeting Allison and Amber’s bed…all in Mama B’s honor of course!

She taught us to have fun while not making fun of anyone…and always taking up the cause of the weak.  She taught us that education was needed to support the weak and that the arts was a great way to express yourself and hear God more clearly.

I never knew her as a young woman, but I thought of her as one.  As I watched her age over the past few years her beauty and love for life remained.

I am thankful that she is in  peace and now dancing for our Lord.  I will miss holding her loving hands and look forward to a time when I can hold them again.

Today’s funeral was beautiful.  Funeral’s are strange.  During a time of great mourning, people whom you love surround you.  I was honored to have such good friends travel so far to support me and my family.  I was deeply touched.

Today is also Lydia’s rebirthday.  One year ago Lydia had her bone marrow transplant.  Today after I returned from the funeral Lydia started to spike a fever.  I am so glad that she didn’t attend.  David’s cousin Kim traveled two hours to babysit her in Mama B’s house.  I cannot thank her enough for such a grand gesture.  After her temp climbed to 100.3 we returned to Birmingham.  If it got to 101 then she needs cultures drawn.  The alternative was to wait it out in the country and go to the county (adult) hospital.  She is a hard enough stick for those specializing in pediatrics.  I just couldn’t bear the thought of putting her through that agony.  Thankfully, since we have returned this evening her temp is in the 99 range.

I left the celebration of my grandmother tonight with the reminder of my job right now continues to be taking care of my children.  Lydia continues to do marvelously, but is still at risk for infection.  We still hope to go to Seattle next week to see her progress.  I pray she is well enough to attend.

So much to say, yet so little coherency to say it…yet here I go again:

I recently read the latest publication on infant leukemia. My head is spinning. Broken down it basically says (in laymans terms of course) that there is no good treatment plan, it usually comes back, and it has researchers baffled.

Not really the bedtime reading I was hoping for.

Basically it is so rare:150 cases a year in babies under 12 months old and only 200 cases in five years if the patient is under 6 months old. The younger the baby, the more aggressive the leukemia equalling more of the death toll.

The article discusses whether transplant really helps with survivorship. Both transplant and the latest chemotherapy protocols are seeing a 40% chance of survival for infant ALL. It mentions Seattle’s own Dr. Sanders’ 2005 publication and her seeing a significantly higher survivorship than the rest of the country with infants in first time remission (76% survival). The new publication seemingly dismisses her findings because:

  1. Her babies may not be of the highest risk group.
  2. The patient must get into remission without relapse with chemotherapy to get to transplant…it’s not 76% of the general population with infant leukemia.
  3. They use TBI (total body irradiation) to get the results they are getting.

Well it’s not rock science to know that it is horrific no matter what path you choose. Yep, no structural geologists needed here. We get it. Really.

I am thankful that Lydia is a miracle. I am thankful that she is a survivor. She hasn’t lived 5 years in remission, but she is surviving today! I am thankful that we chose to go to Seattle. I am thankful that because of her young age and extremely high leukemia counts that hopefully new research can be gained from her good outcome. I hope that it will debunk the myth of Dr. Sanders’ not necessarily having a true representative of the population.

As far as #2 goes…duh. To go to transplant within first time remission, it requires a baby getting into remission via chemotherapy first. The complaint about this is the high relapse rate before transplant. This is a huge problem. We lost many of the babies in my support group to this right before they were to be transplanted…and sweet Annah in Seattle. All the researchers are looking for something to reach the larger population of babies diagnosed. Praying for a cure.

And lastly the effects of the TBI (total body irradiation) and the transplant itself, including graft versus host disease. We chose Seattle because they use TBI on the infants to kill all lurking leukemia. This is not very PC. The ramifications we have yet to see. Cataracts, no adult teeth, growth hormones needed, possible diabetes, infertility, and God only knows about brain development. These possible side effects are terrible. I will cry if I think about them too long, but leukemia is worse. That was the choice we made.

I am thankful that the researchers are trying their hardest to find a better solution for our babies. New babies keep getting diagnosed and the torture begins.

I spoke to one of the researchers who published the new publication when we were interviewing transplant centers. He was honest and bold. He told me about his research versus some of the other research out there and at that point he wouldn’t know which choice he would make upon transplanting protocols (TBI/no TBI/double cord/etc.) if his own child had infant leukemia. That spoke volumes to me. There is no right answer. Every parent has to make the decision that is right for there family.

By the Way, if you made it to the end of the newest publication you would find that these particular researchers no longer recommend transplanting.

Sometimes I get to caught up in expectations of life.  I have done this since I can remember.  Sometimes my expectations end in disappointment and sometimes they are filled with contentment. 

During the last two weeks, I have realized that I was pretty much living on expectations…When certain tests were going to be performed, what would happen during them, how Lydia would perform.  I had an idea of what was expected at any particular time and if anything diverged from “the plan” I was at my limit.  I have never been stretched in my life.  I felt like the finish line was in view and anything that wasn’t in my tunnel, messed up the whole plan.  I didn’t even realize what I was doing or why I was SO stressed until an anesthesiologist diagnosed me.  Funny, huh?  I am glad that doctors and nurses take such good care of the parents too.

After I became aware of being focused on my expectations, I realized that I wasn’t living for HOPE.  Hope and expectations are such different things.  Hope puts things in perspective.  Hope in Christ which includes His trustworthiness, being incharge, being loving, being who He says He is.  This hope includes His awareness of the desires of my heart. 

So all this said, I was listening to some music this afternoon and have a new themesong for the day.  It comes from Van Morrison’s albumn Tupelo Honey.  The song is called “(Straight to your Heart) Like a Cannonball”.  It is a fun and lighthearted song about waiting for the sun to shine.  It just reminds me that tough stuff happens, but to think outside of myself.  God speaks to me through Van often, I just love that.

Today Lydia and I left the hospital for the first time since she was admitted!  We left on a two hour pass.  It was the best two hours in weeks.  We walked over to the Ronald McDonald house and played with my gorgeous sons!  Lydia and the boys were elated.  I am hopeful that we may be able to spend more time “home” soon, but for now I will cherish what I have.