Saturday, November 12, 2011


One Tuesday down, two more to go! We started off the day at 7:45 am getting bloodwork and an IV placed. Then we had an echocardiogram and cardiology appointments. At our cardiology visit, Dr. Everitt said Matthew's filling pressures on his echo would suggest that his heart may be getting worse. Also, Matthew has had this very faint heart gallop in the past that only Dr. Everitt and a few others could hear. Well, on Monday night when I was taking Matthew's vitals and listening to his heart- I heard the gallop very clearly. In fact, it kind of scared me because it sounded so different than what I was used to hearing. I had Matt listen as well and Matt said that what I was hearing was the heart gallop. Because of these things and some other clinical findings at our appointment we went up some more on the Lasix to try to help remove some of the extra fluid. Dr. Everitt's impression was that all these treatments (plasmapheresis, rotiximab infusions, etc) may not be working. However, she wanted to wait for a week to re-evaluate things before moving up Matthew's heart catheterization. I am still hopeful that the treatments can kick in soon and will be effective in helping things improve. I guess this next Tuesday will be telling. If things continue to decline, we will most likely be doing the heart cath next week.

After we were done with cardiology, we went to Hematology/Oncology to their infusion clinic and started Matthew's Rotuximab. This was a first for me. The Oncology section of the hospital was a place I never imagined me and sweet little Matthew needing to be! It is a very sad place. There are about 8 very, very small curtained areas where children are getting chemotherapy infusions. Babies, teenagers, and everything in between- all of them being treated for some kind of cancer I'm assuming. Kids falling asleep in recliners, sweet bald heads- all trying to pass the time as the iv infusion slowly dripped, dripped, dripped... Matthew deals very well with all kinds of things except for hearing another child in pain or upset. There were a couple of babies on Tuesday who were crying. Matthew is very sensitive to this. He became quite concerned and then got upset himself. Tuesday was the first time I have ever heard Matthew say "I hate this hospital!! I want to go home right now!" Physically, Matthew tolerated this infusion better than the first one he received in the hospital. His heart rate remained stable and he didn't get a migrane. We only have two more of these infusions left. Obviously Matthew doesn't have cancer, but Rotuximab is classified as a chemotherapy drug that cardiology is using to give Matthew some good antibodies to protect against lymphoma- since he is immune suppressed and we just stripped away all of his antibodies. Lymphoma has been a scare for us with Matthew in the past and something the medical team continues to watch very closely.

Maybe I'm delusional, or maybe just a mother protectively guarding her emotions. But sometimes I just don't think of Matthew as being the sickly type. For those of you who see him you can attest that he looks like a completely healthy, happy child. Sometimes I focus on that and not so much all the details of what is going on medically. When we were on the Oncology floor one of the child life specialists approached me about starting to collect a "Colors of Courage" necklace for Matthew. She said, although Matthew is not a cancer patient, he's been through quite a bit and this program could probably apply to him as well. I skeptically looked at the list of all the procedures, infusions, surgeries, etc that cancer patients undergo to "collect" beads for their necklace as sort of a documentary and acknowledgement of what they've experienced medically in their life. Much to my surprise, Matthew has undergone 25 of the 30 things on this list- some of these things he's repeated 20 to 100 or more times. Maybe seeing all the beads on a necklace or seeing everything he's been through on a list compared to cancer patients made me realize- Matthew really is very sick!! I know this probably sounds silly, but sometimes going through the motions and not dealing with reality is the only way a mother can survive something like this. I guess I was brought back to reality. :(

Since it's November and Thanksgiving is only weeks away, I wanted to express my gratitude to my parents. Many of you may not know that my Mom and Dad have always wanted to serve an LDS mission. Their plans were delayed when Matthew was sick and had his heart transplant. At Matthew's annual heart cath and biopsy when things looked so great- we all thought the biospy marked a new beginning for easier and improved circumstances with Matthew. It was at this time that my parents submitted their mission papers and received a call to serve in the Warsaw, Poland mission. They were so excited!! They got busy preparing to serve and learning all they could about the Polish language and culture. About two weeks before they were to leave, we found out that Matthew was in rejection. We still didn't think this was a big deal. Matthew has had several episodes of rejection and we felt confident that he would overcome this episode triumphantly like he had past episodes. It wasn't until my parents left for Poland that things really got crazy. When we found out Matthew had coronary artery disease and discovered the reality and implications of this disease my parents prayerfully met with their mission president and was told by President Nielson that my parents mission was not to be in Poland that they were needed in Utah. They have not been released yet, we are waiting to see what happens in these next couple of months. However, they take their mission very seriously and have been a tremendous help in Utah and particularly with Matthew and myself! One of the great gifts that my Mom has is that she makes you feel like when she's with you there is honestly no other place she would rather be- even if that is on the oncology floor behind a curtain in a cramped area. I honestly don't know how I could do all of this without them. I am grateful for their sacrafice and delay of a life long dream once again- even though I felt really guilty for a long time. I know that they honestly feel like they are where the Lord wants them to be at this time.

I am also incredibly grateful for my Mother and Father in law who have been equally helpful. I feel really lucky to have a wonderful relationship with my in-laws. My mother in law has been dealing with some medical issues of her own, but always puts her own needs aside to do anything in her power to express her love and support to our family. She is one of the most selfless people I know and I love her very much. I also worry about her a lot! Sometimes I feel like I need to protect her so that she will take care of herself. I hope she knows how much she is loved and appreiciated!

Even amidst the trials in this life blessings can be found if you open your eyes to all that the Lord has blessed each and every one of us with. I truly am grateful for the blessing of family- immediate and extended. I think the Lord gave me the best on both sides! For this, I truly am eternally grateful!


  1. You guys are amazing!!! All of you, Matthew, Matt, parents, in-laws and you Chrissy! Megan and I think and pray for you guys daily. Please, please, please don't ever hesitate to ask for anything. You were so kind bringing us meals when my dad was with us even though we know how busy you were with Matthew, please let us return at least a small favor. Love you guys!

  2. just catching up on your posts here. i cried as i read about how you have faith in Heavenly Father's plan for matthew- whatever that may be. what a neat trip you guys got to take to florida. i'm sure you will cherish the memories always. we are praying for you all. xo

  3. So it's your last crazy Tuesday tomorrow right? Hopefully all is going well, and Matthew's body is starting to respond. Hang in there Chrissy. Thinking and praying for you always!

  4. I Love, LOVE your parents and in-laws! They are such fantastic people. I am so thankful they are there to help you. Hearing of Matthew's compassion and understanding of the other children is so beautiful...What a sweet little guy. I cherish the time I was able to learn from Matthew, you, and your family in Chicago...and continually now from a distance. You are in our thoughts and prayers always.

  5. Chrissy, just want to tell you to toss any residual guilt you may feel about your parents' mission! Seriously!! I am now a proud Nani (aka Grandparent) myself and can tell you there is nothing I would ever ever choose over helping, supporting and loving my little grandchildren. Love to all, Jeanni