It was a really emotional day for me, just knowing the road ahead for Liam. It was hard to keeps the tear under control, knowing you have to make him sick to make him better.
Liam will get his pic line removed tomorrow, and will get the hickman line placed. Then he will start the conditioning for his transplant.
Please keep Liam in your prayers!!
“Liam’s Journey” Benefit Concert
Featuring Mycle Wastman & Friends
http://www.brownpapertickets.com/event/337768
An Intimate Evening of Soulful Sounds
with Performances By
Mycle Wastman (Season 3 The Voice),
Caety Sagoian and Taryn Cross
Saturday, March 9, 2013
Northwood Hall Event Center
3240 Northwest Avenue
Bellingham, WA
Doors Open at 7 p.m. – Show Begins 8 p.m.
Tickets $30
Concert to Benefit 2 Year Old Liam Smith
for 2nd Bone Marrow Transplant
Mycle Wastman produces and records his second album ‘I’m All Over It’. This Without An Umbrella Productions gets you closer in this behind-the-scenes video o…
Yesterday was IVIG and it turned out being a 6 hour day. Liam also had a pic dressing change along with labs and meeting with the team. Liam will get his Hickman placed on the 27th and will be admitted. He will start conditioning on the 28th and I’m so scared. To completely let go and let God, is not possible for me right now. I know I need to but the fear is their regardless of my faith. I know what they are about to do to Liam and maybe that is a comfort for some, but for me it is not. They are adding ATG to his conditioning and it will make Liam very sick. To see your child fighting to breath or puking blood or depending on the many drugs they give to keep him alive is very unnerving to me. I watched him stop eating stop playing and depending on a feeding tube along with TPN to keep him alive. He became very thin and weak. Then you wait everyday to see if the conditioning was enough. Will he get full engraftment, will he survive. The fact that Noa is his donor is a blessing but does not come without worry. I wonder will Noa handle being sedated? Will Noa be able to handle it emotionally if things don’t end well? Will I be able to handle it? I don’t know and like this whole journey we don’t know how it will end. So I beg God everyday to please not take any of my children from me. I love them so much and hope I get to watch them grow to be old…
At the age of 3, Nicholas Volker of Monona, Wisconsin, had already endured more than 100 surgeries, but was progressively getting sicker. His intestines continued to swell and more abscesses formed, and doctors concluded they were dealing with an unknown cause of disease.
A collaborative team of scientists and physicians, lead by Dr. Alan D. Mayer, assistant professor of Pediatrics at the Medical College, and pediatric gastroenterologist with Children’s Hospital, decided to use genetic sequencing to identify and treat an unknown disease.
“Exhaustive efforts to reach a diagnosis revealed numerous abnormalities in Nick’s immune system, but none pointed to a specific disease,” Dr. Mayer explained. “So we decided the next logical step was to sequence his entire exome.”
TO READ THE FULL ARTICLE CLICK ON THE SOURCE LINK ABOVE
Source: http://manpowerillini.blogspot.com/2013/02/micheal-leneski-great-father-good-friend.html
I was at his wedding in February 1996. Micheal and I were at Travis’ wedding in 2002. Travis and Micheal were at my wedding in 2008.
Please, feel free to post a comment about you and Mike below. We love you, Mike.
Mr. Micheal K. Leneski, age 42 years of Fremont, passed away on Friday evening, February 15, 2013 at Spectrum Health Blodgett Campus in East Grand Rapids, Michigan.
He was born on June 30, 1970 in Newburyport, Massachusetts to Victor & Joanne Leneski. Mike was a US Army Veteran of Desert Storm, and he was affiliated with Fremont United Methodist Church.
He moved from Oklahoma to Fremont 8 years ago to be a chef at Giuseppe’s Restaurant. He had also been a chef at Ramshorn Restaurant, and he had most recently been employed by Dunham’s Sports in Fremont. Mike was actively involved with the Fremont Football Programs, and he was a fun loving kid at heart.
On February 3, 1996 he married Amy L. Pierce and she survives him along with 5 children: Logan, Dylan, Brandyn, Christina, & Peyton; his mother, Joanne (Shawn) Walsh of Maine; his father-in-law & mother-in-law, Albert & Heidi Pierce of Muskegon; 1 sister, Michelle Leneski; 3 brothers: Pete (Angela) Mackenna, Tony & Joey Leneski; his brother-in-law, Andrew Pierce; and several nieces, nephews, aunts, uncles, & cousins.
Please pray for their family’s.
Feb. 5, 2013 – Angel: Alex Hilton. 3 years old.
http://www.savemyalex.com/
Feb. 12, 2013 – Angel: Lacey Horwitch,
https://www.facebook.com/laceyhorwitch
Noa’s appointments went well. I am so proud of his courage and selfishness. I should get the results of his tests in a few days. It was strange to go to an appointment without Liam, but it was good to have Noa and mommy time. Liam stayed with Nana and had a blast 🙂 I am so thankful I have family here to help. I don’t know what I would do without them.
Update from Mommy: Liams appointments went good. He had nutrition, team, pic dressing change, and lab draw. I also learned Noa will need to be here the 11th, to start his donor work up. Liam will have a bone marrow aspiration and lumbar puncture on the 14th. There hopes are to do Liams 2nd transplant on March 6th. It will depend on the results of the marrow and lumbar puncture. If there is HLH in either, it will change the game plan.
Kristy created a page for those who want to follow Liam on facebook. We have a facebook group page for Liam too. But we can not open it to the public. We are hoping to help raise more awareness with the new facebook page. It now makes it easier for anyone to stay up to date on Liam’s progress. You can now share Liams status with others too, you could not do that with the group page. Thanks so much for following Liam’s Journey.
NEW FACEBOOK PAGE LINK: https://www.facebook.com/LiamsHLHJourney
Please share this page, its so important, in raising awareness for HLH. They really do deserve a chance to fight. Thank you
This is Noa’s favorite song for Liam ♥ This song really tells the story of Liam’s Journey. His brothers are his HERO’s 🙂 Listen to the lyrics.
