Liam | CaringBridge

Liam’s Story
Welcome to our CaringBridge site. It has been created to keep you all up to date on Liam's care.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook. Thanks for stopping by!!!

From before Liam was even born, he has been active!!! He seemed to like being inside me so much though, we had to fight hard to get him out, including an emergency c-section late on 12/18/01. Just one week before Christmas.

When Liam was little he developed RSV that required him to be hospitalized. He was only 5 weeks old and it was the scariest thing! Then he developed severe reflux, which lasted for the next 18 months. I thought it would never end!!! But he managed to smile his way through all of it!

We have often joked that he doesn't have any nerve endings in his body! He is covered head to toe in bruises, but never says OW when he runs into thing! When I would take the boys in for shots, Liam would laught through them, while the others were crying!

In early October of 2005, something just was off with him. He wasn't eating, was sleeping a lot (REALLY not like him) and he had strange red marks on his leg. First we were sure that it was ringworm. However, it dissappeared over 2 days, so we thought it was just some random thing. Then, it became dots all over his legs. I thought it could be chicken pox, even though he had been vaccinated so I called the doctor's office. They didn't think he needed to be seen. I really felt something was weird, so I added that his throat appeared swollen, perhaps it was sore. Ok, I didn't mention that his throat has ALWAYS been swollen. But, it got us into the doctor.

Dr. Halbur is not our regular pediatrician, but she was on that night, and we have dealt with her before and I really like her. She looked him over and said it was some virus. She kept staring at his bruises and I was afraid that she thought we abused him. She smiled and said, no, they would look different. She asked permission for a blood test to be sure all was well. I had no problem with that. I assumed she was looking for hemophilia, which I knew he didn't have. It would have shown up earlier.

When she came back into our room after the blood came back she looked shaken. She had tears in her eyes as she told us she had bad news, Liam had leukemia. I was in total shock. Leukemia is cancer, my little boy didn't have CANCER, he was just a little sick. How could that be??? She said she would pray for us and that we could call her at home with any questions. That really scared me, when a medical professional puts aside medicine and goes straight to religion, I get worried!

The next day, Liam, Jeremy, Mom, Dad, and I met up at Blank Children's Hospital in Des Moines to meet with the department of Hematology/Oncology. It was scary. (Not the clinic, just the fact that we needed to be there) Then the doctor seemed shocked that we had been told leukemia. He said it was most likely just a random virus that hit him harder. They did a bone marrow test, but I was told it was just to prove to us that he didn't have it. It came back great and we were sent home elated.

Two weeks later, the phone rang. It was the same doctor, but this time was different. He said he had very bad news. Liam has monosomy 7 (missing one of his 7th chromosomes) and MDS. I asked if it was survivable, and he responded "Not Very"

Since that day, our world has been spinning off course! His blasts quadrupled in 4 weeks, so we graduated on to another hospital and have choosen St. Jude's. We were told to expect a bone marrow transplant and we know that we will need an unrelated donor, as we all tested as not matches.

And so our new journey through life begins...

Newest Update

Journal entry by Regina Reinier

We are in Memphis.  This has been a less than pleasant visit.  I'm still processing a lot of it and some things are still unknown.

I love this hospital and all that it has done for my family.  I'm slightly crabby at a few individual employees, but know that I recognize I'm cranky and that one person doesn't speak for an organization. 

Liam had an ultrasound of his thyroid neck yesterday here.  I was quite aware that they were measuring many nodules as I've watched enough of these by now.  We went to the endocrine clinic next where they manage his growth hormone and thyroid hormones.  This visit was quite unpleasant.  It was stated that they don't feel he is taking his medicine.  I will be the first to admit (and Liam did too) that there have been some days that he has missed a dose.  However, he is taking them.  This took a further negative turn but I'm not looking to vent about it here.  I believe we have resolved it.  His thyroid levels are very poor and need to change.  We all agree on that.  He started a new dose today.  They also said they don't think he'll grown anymore than his 5'4" current height.  They then ordered a bone age test to verify this.  We don't have the results of this yet.  

He saw physical therapy and they thought he was doing ok.  There are some exercises they'd like him to do but he doesn't have to go back to PT at home for awhile so that was great.  

Today we went to see the thyroid cancer doctor.  First a physician's assistant came in.  We don't know her, she doesn't routinely care for us or have any rapport with us.  She immediately looked very seriously at Liam and said "Liam, you have a problem"    My heart sank.  She went on to say she didn't think he was taking his meds.  Phew.  I told her we were awaiting the ultrasound results and she had scared me as I thought she was referring to that.  She said that the ultrasound results were poor because he wasn't taking his meds.  She even went on to say that 'thyroid cancer is rarely fatal, but when it is' it's due to patients not managing it well and it getting out of hand.

I am still not ok with this and I have waited several hours to process it.  Again, love this hospital.  Just not loving today.

She was followed up by the doctor.  This doctor was also new to us, apparently ours moved to Sweden.  This doctor also said he wasn't taking his meds.  This was my limit.  I pulled out the bottle of pills that showed we HAD been filling it (apparently it didn't register that it had been filled in their records) and said we keep being told he's not taking it when he is.  I'm not sure she believed me yet.  She is unsure of whether she wants to do surgery to remove all of the nodules or not.  Apparently there are multiple nodules that shouldn't be there and she wants to discuss it with the team on Thursday to make the decision.  I kind of lean towards TAKE THEM OUT OF HIS BODY but also dislike surgeries for Liam.  

We then went to psychology.  It was Liam's appointment but by this time I could have used a couch to lay on and a person to make me ok with things!  We discussed all of this and his schooling.  This was just a regular check up that they do here.  He fooled her yet again into thinking he's a normal teenaged boy ;)

This was all followed up by a photo shoot here.  He will be using these as some of his senior pictures.  When it was done I asked the photographer to take one of Liam and I, I have placed it here.  The rest will be edited and sent to me down the road.  

I am not sure when we will here the decision on surgery etc...  We're flying home tonight.  
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