Stem Cell Transplant

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.

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.

This afternoon I ran into a couple that I hadn’t seen since Lydia’s diagnosis.  The couple was aware of Lydia’s cancer and was surprised to learn that she was alive and thriving.  They asked if she had undergone a stem cell transplant.  I could tell by her intonation that she was locked and loaded with opinions.  I answered her “yes, she had a umbilical cord stem cell transplant”.  She answered me, “praise God for stem cells”.  She went on to let me know that she was glad that they were doing something good with those embryos and look they saved my girls life. 

Whoa mama!  Did she really say what I think she said?  I had to speak up.  I quickly let her know that I am so thankful that a mother offered her babies umbilical cord when he/she was born to give life to my baby.  I also let her know that I was opposed to embryonic stem cell use.  She asked me why very tersely.  I told her that I thought that it would be a justification for abortion.

She went on to say that a woman who is thinking of aborting will abort anyway.  I responded that I have two children that were so close to being aborted, but their birth mothers had thankfully changed their minds.  The boys birthmothers didn’t have any easy solution, but they chose mercy and justice…as hard as it was for them.  I am glad that embryonic stem cells were not offered for Lydia, because that temptation would be too much to bare.

She responded that you never know what someone is going through.  She is right.  I have know idea what she was going through.  I wish that my responses to her had been filled with compassion instead of shock.  I truly didn’t feel defensive, just stunned. 

The reason that I relayed this conversation was to straighten out any confusion about the stem cells that were used in Lydia’s bone marrow transplant. 

My heart is filled with compassion for mothers that face(d) decisions for the life that they carry.  There is grace for all of us. My sins are just as large as anyone elses.  God is so much bigger than anything that we can come up with.  No matter what our opinions are, they don’t change our gracious God’s love for us all.

Day 13

Waiting on the Lord is tough.  I mean really.  There is nothing easy about it, in all human terms.  Waiting was not ever one of my strengths, just ask my hubby.  I am learning though.  As I see Lydia sick, I wish there was something that I can do.  But there isn’t anything I can do, really, but just love her.  She is God’s and He has given her to me to love her…and that part is easy to do.  The hard part is waiting.  But the best things in life are worth waiting for.

So last night was rocky.  Lydia is still having problems breathing through her tiny airway.  Thankfully, she was nice and stable all night long, though she had to get many breathing treatments.  As her counts come in she should be getting better.  The doctors and nurses are all very optimistic, while I am on pins and needles waiting.   And Lydia still has fluid issues, though not as extreme as before.

And for all the nerds out there in cyberworld, here are todays counts:  ANC 270!!!!!!!  This a bigstep towards Lydia’s healing.  Please keep praying, God is listening, loving, and healing our baby girl.