Monday, May 24, 2010

Day +255....255 down, 110 to go to get to 1 YEAR of Remission











Hello Everyone!! Thank you for your patience in waiting for me to update. Dylan is taking a nap right now, so hopefully it is a long one! God could not have blessed us with a better child.....cancer and all! I would do it all over again if it meant being able to spend time with him. He is so full of life! Erik always says that somehow Dylan knows how blessed he is to be alive, and that is why he is such a happy child--and in some ways, I believe that too! He keeps us entertained 24/7. He is always learning something, and surprising us with new adventures everyday. Developmentally, Dylan is soaring. He has come so far in the past 5 months. When we came home in December, he was barely moving around. He would sit in your lap and smile, but that was about it. Now, he is a crazy, moving machine! We think that he is going to skip crawling and go straight to walking. For the past couple of weeks, he has been learning to stand along the couch and ottoman, and now he can stand there for long periods of time without any assistance. He is working on side-stepping right now, and I'm sure he will be a pro by next week. We got instructions from the physical therapist to limit his time in the jumper. This was a hard task because he LOVES to jump in his jumper--the problem with that is he thinks everyone is a trampoline and wants to jump everywhere!! So, we have been spending more time in his walker and walking with holding onto our hands. He has been using the walker for about 2 months now. He used to always get frustrated in it because he could not JUMP in it, like the jumper, and would always get bored quickly. That was up until about 3 days ago.....NOW, he loves it!! He is a walking maniac! He quickly darts from one end of the house to the other! It really is amazing how quickly he got the hang of it! He even chases me and Lily around the house! He thinks its hilarious to run into me while I'm in the kitchen cooking or cleaning. He rams into me and then laughs hysterically! This kid is hilarious! He is a constant joy....even when he is being a little monster....and yes, he is a normal child....not perfect ALL of the time :) He loves to clap! He has been clapping with his feet for months (which I have to say is a strange, but entertaining talent), but he is now also clapping with his hands! It is so cute! He loves to wave at people, and he is quite fascinated with his hands and how they move. He loves to blow kisses too! He usually just smacks his mouth repeatedly...but we know what he is trying to do. He is becoming more vocal. He used to just growl and scream to make noise, but is now 'singing' a lot. He loves to be heard! Especially if people are talking, he wants to make sure you remember he is there. He is not saying any words yet, but when you tell him to say 'Daddy", he blows a rasberry! It is hilarious! He does it almost every time! He LOVES the water! He practically jumps out of my arms when I walk by the sink (because that is where he used to get baths) or if I walk by the tub with him. Bathtime is his favorite time of the day! We have gone swimming a few times and he LOVES it! We have to be careful to keep him in the shade because of his eyes, but as long as we have shade, he is happy! Medically, everything is going really well. His labs were perfect and he has not had many major issues. We will be getting his eye pressure checked again on June 9th, so please pray that the drops are working so we can avoid surgery. I cannot tell you enough how wonderful Dylan is! Everyday is a blessing. And when I get frustrated with stupid problems of life, I look at him, and am reminded of the miracle that we are blessed with. In the grand scheme of things, the little problems do not matter and they are not worth stressing over. Life is a blessing. We are not guaranteed a certain amount of time on earth...our kids, our husbands, wives, family, and friends, are all gifts from God.......cherish each and every one of them!!
Many of you have been asking about Abby, and we appreciate your support and prayer for her. She is hanging in there and fighting hard! She is on a heavy pain medication drip that is controlling her pain well. Although she is sedated and sleeping a lot, she also has her entertaining moments. She had a few great nights this week where she was happy and playful....and those times are cherished greatly. They all celebrated her sister Alyssa's, 4th birthday party on Saturday and had a great time. There is not a lot to update right now, but I will let you know as soon as I have new information.
We love you all and thank you for your continued prayer and support.
Walking by faith,
The Praskins



Monday, May 17, 2010

Tucson Visit and Clinic Picnic





































Hello Everyone!! We headed down to Tucson on Friday for Dylan's appointment, and then spent Saturday hanging out with Abby and family at the clinic picnic. It was great getting to spend some time with Abby and her family. She is so much fun! She was in a great mood on Friday night when we went out to dinner. She was all smiles. So precious. It's wonderful watching her and Dylan interact....they are fascinated with each other. But, Dr. Graham gave orders for no kissing....no licking....no touching.....so we had to be careful! :) The two kiddos were the center of attention at the picnic. They hung out and played underneath the big umbrella, and the crowds came to them! It was great to see all of our nurses who took care of Dylan--they had such an impact on us. The picnic was actually a going away party for Dr. Graham. But, fortunately, we are not saying goodbye! He is moving to Mesa to work at Banner Desert. We have only one more trip to Tucson :) I have a feeling I will still be going there every once and a while to visit friends, but no more doctor visits. :)
DYLAN UPDATE: Dylan's labs were perfect. He is doing great....I will update on next post about more details, but for now....Abby is heavy on my heart.
ABBY UPDATE: Well, Abby was happy and vibrant during our visit. Her smile lit up the room!! When there was music playing at the picnic, she was bouncing away, dancing to the music. ADORABLE!! Now, the tough stuff......sadly, her treatments are not working. Her leukemia is so strong and will NOT give up. But neither will Jennifer and Jon! There are not any more options left to try. They are hoping and praying that this treatment works. She is in a lot of pain right now. They are trying to stay out of the hospital, but if her pain cannot be controlled, then they will be admitted. WE ARE PRAYING FOR A MIRACLE......PLEASE, PRAY WITH US! I don't know what else to say :( Thank you for standing with us through this journey. We have had a happy ending, but so many families have not had theirs.....please pray for the Mullens.

Random pics of the munchkin














































Thursday, May 13, 2010

PLEASE PRAY FOR ABBY



Hi Everyone! I will update about D later with some pics, but for now, we need prayer for Abby. I have been dreading writing this post, and have been hoping and praying that the situation would change so I would not have to write it. As you all know, we have grown to love Abby and her family very much. Last week we found out that Abby's leukemia is back in her bone marrow and it is stronger than ever. Usually, if it comes back after a transplant or a lot of chemo, it is a stronger disease. Her leukemia DOES NOT want to go away, even with all of the "BIG GUNS" that have been used to try to kill it. Last week, Abby had 3 doses of high potency chemo drugs that were supposed to knock out the leukemia long enough so that they could fight it with another drug. At first, it looked like the chemo worked and Abby's counts dropped just like they should have. Then two days ago, it started fighting back, and came back strong. They are doing 3 more doses of the chemo in hopes that it kills the remaining fighting cells. If this does not work.....then Abby's chances of surviving this horrible disease are not good. The original protocol was to do the 3 doses and then use another drug, called Interferon to 'encourage' Abby's grafted cells to fight. They cannot move onto the Interferon drug until the Leukemia has been knocked out.....and it is NOT going away easily. PLEASE PLEASE PLEASE pray for this amazing family. Mom-Jennifer, Dad-Jon, Sister-Alyssa(5), and Abby, who is 16 months old. There are no words to describe how it feels to fight for your child's life....and to be losing that battle. Abby is such a beautiful little girl, with a bright smile, and tons of personality....and it's hard to imagine the world without her. This is going to be a very tough couple of weeks as Jennifer and Jon fight this Leukemia harder than they ever have before. We are going down to Tucson tomorrow for a clinic visit and will be able to spend some time with them. I will hopefully be able to get some cute pictures of Dylan and Abby together and try to capture their unique bond.....she just lights up every time she sees Dylan. Please pray for Jennifer and Jon to get some much needed sleep and clear minds as they will be having to make some very difficult decisions regarding Abby's treatment. At this point, they are willing to do whatever it takes. My heart is so burdened with pain for them, because I can imagine being in that same spot. When I even think of this happening to D, every fiber of my being aches and cringes....it's an all too familiar situation. Please pray for them. If you would like to follow along with their journey, I will be updating their caringbridge site regularly. http://www.caringbridge.org/visit/abbymullen
Thank you for your prayers and support! We love you all!
The Praskins