Wednesday, December 30, 2009
Tuesday, December 15, 2009
Today is a GREAT day!! The surgery went well and Dylan is a super trooper!! He did surprisingly well with not eating after 1am--he just wanted to hang out at 4am-so we have had a loooonnnngggg day. Dylan's double line was removed without any issues. He will have a little scar as a reminder of this crazy journey we have been on, and every time I see it, I will be reminded of God's miracles!! Even though I'm reminded of that every time I look at D!! He still has his single line and we will be taking that out in a month or so, depending on when we can go to all oral meds. His spinal tap results showed HEALTHY spinal fluid and his preliminary Bone Marrow results showed HEALTHY Bone Marrow--LEUKEMIA FREE!! We are so excited and relieved to get the good results!
It is a constant struggle to trust the Lord and not worry about his Leukemia coming back. He can still relapse at any time. Today I was reminded, yet again, that I CANNOT control any of this and I AM NOT in control of anything (even though I try!). God has been so good to us and has given Dylan a second chance at life! We will NEVER take that for granted!! None of us know how long we are going to live or are promised any amount of time here on earth-so I will CHERISH every second!! Even when D has me up all night, I will cherish the time I have with him. Dylan is doing phenomenal!! He continues to have great counts, all of his levels are good, and he is growing and thriving! What a blessing he is to us!! I still can't believe that it has been 6 months since he got diagnosed! Some days it felt like an eternity, but now, in the grand scheme of things, it was only a short time. During all of the hospital days, I had so many people tell me, 'This too shall pass'. And when they would say that, it would almost make me mad....because it felt like it would NEVER pass!! But guess what? It did!! The horrible days of crying all night and watching Dylan suffer are over!! Even as I write this I think, 'Well what if it comes back, what if the nightmare isn't over?' I know that IF the unimaginable were to happen, then God will still be here. He will carry us through as he has this whole time. He will never leave us or forsake us, and we can rest in that truth. Thank you for your prayers, your encouragement, and your support--we cannot thank you enough!!
***Reminder*** Hopekids will be hosting the Scottsdale Fantasy of Lights and a portion of the proceeds goes to support over 600 Hopekids, with Dylan being one of them! This is an amazing Christian organization that allows families to go to events that they would normally not be able to attend. The group is so supportive and wants each kid to live as normally as possible and they help us as parents stay sane in our otherwise crazy worlds!! You can go to Hopekids.org to find out more about this amazing organization!! Please join us on Dec 23rd or 30th at the Fantasy of Lights!! If you can't make it there one of those nights, please go and support the other kids that will be there. We still need some back-up volunteers for both nights, so if you are available, please let me know!
Sunday, December 13, 2009
Thursday, December 10, 2009
We also need 5 more volunteers for the night of the 30th to help direct traffic and greet people as they are coming in. If you are available that night and are interested in helping out for charity, please email Carrie Gauntt at email@example.com and she can give you some more information. WE APPRECIATE ANYONE WHO CAN COME OUT AND HELP!!
Also, Owen's artwork was chosen by Phoenix Children's Hospital for their annual Christmas Cards!! There were only 7 chosen out of hundreds, so we are very proud of him!! Please go to pchkidsart.com to order cards. Every dollar goes back to Phx Childrens to help the kids!!
Merry Christmas to everyone and we hope to see you at the Fantasy of Lights !!
Sunday, December 6, 2009
Thursday, December 3, 2009
Ewok! Ha!! So cute!! He is even growing some hair!! He has little fuzz all over his head!! At this point it looks dark blond....but we will see!! I cannot wait to see what each day brings!!
Sunday, November 29, 2009
After a week of throwing up, followed by 4 days of pure crankiness......we FINALLY have our happy boy back!! He was given a patch to help with his high blood pressure last week because he was not taking his medicine well, and it turns out that the patch does more for D than lower his blood pressure! It also makes him sleepy, hungry, and EXTREMELY cranky!! He did not quite enjoy his first Thanksgiving and pretty much slept or cried the whole day. We took the patch off the next day....and 12 hours later......Smiley D was back!! He woke up at 3 in the morning, and as I was changing his diaper, I caught a smile....I almost cried!! I was so excited!! And he has been happy ever since. Now that he is off of the patch, he is not eating as well or sleeping.....but I'll take smiles over sleep any day! Ha!!
We drove up from Tucson on Wednesday night and will be driving back tomorrow morning. We have really enjoyed our time being home and look forward to being able to move back permanently! We had a wonderful Thanksgiving with Erik's family on Thursday, some shopping with my sister on Friday, celebrated Thanksgiving with my family on Saturday, and are enjoying a relaxing Sunday at home before heading back. It was a jam-packed weekend, but also a lot of fun.
The plan is to go back to Tucson for the week. He will have another 3 clinic visits this week and then hopefully we can go down to 2 visits a week starting next week. If the doctor feels that Dylan is ok to visit only 2 times a week, then we will move home on Friday!! YAYAYAYAY!! Our lease to our condo is up on Friday also, so everything is working out well! We are soooooooooooooooooooooo excited to have an end in sight and be able to live at home as a family for the first time in over 5 months! 5 months!! It seems so crazy that it has been that long. The Lord has truly protected us so much over the past 5 months. We have so much to be thankful for this year.
It is easy sometimes to dwell on the negative things that are going on, and when I start to do that, I am brought back to the reality that my baby is ALIVE. He is here, with us, and we are able to celebrate this holiday season with him. God has been so good to us! Although our journey is not over yet, and we have a long way to go, we will cherish every moment with Dylan and be thankful for every second with him that God has blessed us with. I still have the daunting task of multiple meds 2 times a day, dressing changes, and the stress of staying ahead of the craziness........but we are COMING HOME!!!! YAY!! I cannot even begin to express how excited we are!! Please pray for us as we need to make some big decisions coming up regarding work and insurance. Our insurance is through my job, and I am only able to stay on LEAVE until Janurary 4th. I do not want to have to go back so early, but it is probably the only option we have right now. Our insurance costs will go up to $1500 monthly if I stay home. I have an amazing job waiting for me, along with my friends and co-workers, but I would much rather stay with Dylan for a little bit longer. He still needs a lot of attention and care, and it would be difficult to leave him at this point.
Thank you so much for all of your prayers and support!! We are thankful for such amazing friends and family! We love you!!
Friday, November 20, 2009
Tuesday, November 17, 2009
Monday, November 16, 2009
We are waiting patiently with great anticipation of Dylan's 60 Day transplant results. We were supposed to find out Friday, but there was a delay with the lab. We were told we should find out later today or tomorrow morning. We appreciate all of your prayers and all of those that participated at the Leukemia walk on Saturday evening. It was a great turnout and Michelle will update the blog shortly with details and pics.
Tuesday, November 10, 2009
Friday, November 6, 2009
Reminder: The Light the Night Walk is NEXT Saturday on the 14th :) We are not going to get shirts because of budget, but we are all going to try to wear blue....any color blue :)
Tuesday, November 3, 2009
Hello all!! I am overjoyed to tell you that we have a very smiley.....and close to healthy 6 1/2 month old! These past few days, he has been a different boy. We are hoping and praying that this change is here to stay!! It's almost like he did a complete turn around in one day. He is smiling, he has a different cry, and.....he is throwing temper tantrums!! YAYAYAY!! I know that may sound like something strange to be excited about, but we are!! It's normal! And normal is what we want :) There is no denying that this little guy is spoiled.....but what else could we do?! He gets frustrated when you are not holding him, and he wants his own way......he is a normal, selfish baby :) And this baby is now showing his tough side. He has found that he has muscles and is starting to use them. He now loves to arch his back, and is kicking a lot more often and is trying to move in any way he can. Well, now when he is in his car seat, and does not want to be in there, he tries to arch his back and holds his breath.....it's actually quite funny! I would never think that I would be happy to see my child throw a fit....BUT I AM!! Of course we will be working on these things as the days go on, but we are excited to see the changes. HE HAS BEEN SO SMILEY and has even started to laugh again.....I almost started crying the first time he laughed again! We are excited to see the daily changes in Baby D and it has made life in Tucson so much more fun!! He even slept for 6 hours straight last night.....we will see what happens tonight (it may be too good to be true). He is working on his neck muscles again also. He is still a little bobble head, but is slowly gaining back control. The crying fits have subsided and are hopefully a thing of the past! He has gone 3+ weeks WITHOUT blood and platelets transfusions--he has gone 4+ weeks WITHOUT throwing up--and he is on his way to being a perfectly healthy boy!! We are sooooooooooooooooooooooo excited to see what the results of his grafting tests are next week! D is also starting to grow back some of his hair-eyebrows-and eyelashes! I thought his face was dirty the other day and I was trying to wipe his eyebrows, only to find out that the "dirt" WAS his eyebrows! HA! He is growing back DARK BLACK eyebrows and eyelashes! Who would have known? The chemo and some of the anti-rejection meds he is on can make his hair grow back darker, so we will see what grows in the next few months!
To think that 5 months ago, the doctors told us that he had a 20% chance of surviving this aggressive disease.....WOW....God is AMAZING!! Look at him now.....look at what God has done in his little body! We are blessed beyond measure and are so excited to continue on this road to recovery. We are now getting to the point where we can go to clinic every other day. Today was a day off....so nice!! I still have to give him his morning meds at home, but it is much better than hanging out in clinic! He is still on a lot of meds and most of them are through IV. Eventually, they will all go to oral meds, but we are still a month or two away from that. Dr. G says that if all continues to go well, then we may be able to go home-home (to Surprise) by the end of the month!!! What a great Thanksgiving this could be!! We all have so much to be thankful for......and I will NEVER take life for granted....NEVER AGAIN!!
Well, I better get off to finish the rest of our nightly routine. Bath time, and then dressing change....and then hopefully bedtime!! My favorite!!
Please pray that Dylan's body continues to heal from the inside out, and that his counts continue to go up. Please pray that Erik and I can stay strong over this next month until we finally get to be together as a family again. WE ARE SOOOOO EXCITED TO GO HOME!! We will still have to come to Tucson 2x a week....but that is OK with me! :)
Sunday, November 1, 2009
Saturday, October 31, 2009
He has been doing so well with his counts--but this is a huge struggle. I have had numerous people emailing me and suggesting what it may be....so thank you....I just wish it was as easy as another ear infection or teething.....something that can be fixed. We are changing his formula from Soy to lactose free to see if that makes a difference at all. Also, his cultures from Monday came back showing an infection, so that may have something to do with it. The infection may be in one of his lines, so they took more cultures today and will get an answer early next week. The antibiotics are being changed once again to catch the culprit behind the infection. Please pray it is something that antibiotics can fix and that we do not have to take out one of his lines.
Well, that is just a little insight to what we have been dealing with this week. On a side note, we have really enjoyed the visitors that have come by and appreciate everything that everyone has done for us. Thank you for the cards, the encouraging emails and comments, and the tangible things such as gift cards....you guys are amazing!! We love you and I hope to have a good report for you later :) We also dressed Dylan up as a little dinosaur yesterday for the clinic's dress-up party, so there will be pictures posted later.....SOOOOO CUTE!!
We know that God has a plan in this, and we are looking to Him for strength....thank you for your prayers!!
Hope you all have a fun and safe day!!
Tuesday, October 27, 2009
The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.
A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
Please make a donation to support my team's participation in the Light The Night Walk and help save lives. Be sure to check my team's Web site frequently to see my team's progress, and thanks for your support!
If your family would like to carry a illuminated balloon and get a T-Shirt, a minimum of $100 donation is needed.
West Side Walk Information:
Saturday, November 14th 2009
Sahuaro Ranch Park
9802 N. 59th Ave.
Walk Distance: 2miles
Check In: 5:00pm
Opening Ceremony: 6:00pm
Walk Start Time: 7:15pm
Sign Up Information:
1. Log onto lightthenight.org
2. Click the find a participant/team link located in the blue border at the top. Enter Dylans Dream Team in the team look up.
3. A list of names of participants walking with the team will appear. Click on Dylan's Dream Team located next to any name.
4. This is the team website page. At the bottom, you will see a spot to sign up. Donations can be made through all major credit cards.
There is no donation required to walk. We are trying to raise money as a team...not as individuals. You may have someone sponsor you if you'd like.
Please join us in the hope of finding a cure! Donations of any size are accepted. If you cannot walk but would still like to donate, you can do so. Thank you to everyone for your continued support of love and prayers for my family! You are truly appreciated!! Any questions, you can contact me at: firstname.lastname@example.org.
We will be ordering Team t-shirts...sign up ASAP so we know how many shirts to order.P.S. Dylan-the guest of honor, may be doing an appearance! This is exciting news :)
Dylan's Auntie Mellissa
Monday, October 26, 2009
"LIKE FATHER.....LIKE SON--THIS IS THEIR AFTERNOON NAP"
Good evening everyone!! Well we have some great news!! Dylan is continuing to make his own platelets. His numbers are increasing every day! This is a sign that the donor blood is grafting and grafting well!! The doctor believes that on his 60 day testing, it will show that his cells are 100% donor!! His white count is WAY up to 10.9....which is elevated due to the steroids he is on, but still awesome nonetheless. The doctors AND mommy and daddy, are VERY happy with his progress and are excited to see what results we get in the next few weeks. This is only one piece of the puzzle. Dylan is not acting so well. He is back to being grumpy and uncomfortable for 90% of the day and is usually crying unless sedated by Ativan. This is a very difficult trial for Karyna and I, as we are dealing with the constant grumpiness and crying ALL of the time. Not only do we feel horrible for Dylan, but it is very trying on our patience, along with all of our other responsibilities. PLEASE pray that the doctors can figure out what is making Dylan so fussy....PLEASE!! EVERYONE will be happier! And I long to have my happy baby back. We have not seen too many smiles the past few days and are looking forward to having them back very soon. For now, the doc is going to manipulate a few of his meds to see if that is the problem. Dylan is finally off of his TPN!! PRAISE GOD!! That is at least one less med--and I am excited about that!! He still does not eat too well during the day, which is strange. At night, from midnight to 6am, he usually eats between 4-6 ounces! This is a great step in the right direction! Please pray that he starts to eat more during the day, and that he does not have to have any more TPN or other supplement. All in all, Dylan is doing PHENOMENAL and we are excited to be on the road to recovery. Please pray that we do not run into any more unexpected obstacles and that he will continue to feel more like himself.
I will leave you with a cute message that I got from one of my favorite people:
Jake and I are having a discussion right now about how Dylan is like this little baby superhero so we're picking out super hero names for him and talking about what he would wear. Jake likes the Dylanium Falcon (after the Millenium Falcon, the ship on Star Wars), but I said it just doesn't have that ring to it. We'll work on the name. We decided he has the power to overwhelm foes with his unparalleled cuteness able to control adults everywhere, and he has the regenerative powers of wolverine, he's completely impervious to any sort of attacks. If you walk into his room and he's not there, don't panic, it's probably cause he's turned invisible, either that or he's out fighting injustice. Jake says to check baby gap for capes. I say his outfit should be tough, like maybe leather and cool shades. We could probably turn this into an awesome comic book. We'll contact Marvel, see what they think.
Praying for Dylan's continued healing, strength for you, and protection for your marriage. I love you tons.
Wasn't that cute?! I love you Em and Jake!!
Thank you everyone for your continued faith in God, and believing and praying for Dylan's healing. You all are amazing prayer warriors!! God has brought us so far, and yet we seem to have another marathon ahead of us! We are thankful that we are NOT ALONE!! We love you!!
Walking by Faith,
Friday, October 23, 2009
Good evening everyone. First thing I want to say is that God answers prayers!!
Not only is Dylan off of oxygen and eating well, but he is starting to make his
own blood products again!! This is something we have been waiting for and I am
thrilled to tell you that his platelets have been stable the past few days and
even increased today!!! His WBC is up to 4.9 and he is doing well!! The Dr G's PA, Tracey, said she may even do a cartwheel tomorrow if his platelets go up again!! When the nurse came in with the blood test results this morning-I cried out of excitement,joy, and thankfulness!! How great is our God? He is faithful and has brought us through so much!! We posted a slide show on youtube (see previous post), under Baby Dylan's Story.....and it is far from being over!! Enjoy!! We are so very proud of our lil fighter and are in awe of the miracles that God does in his life
Hopefully we will have more great news tomorrow!! Keep praying! We love you!!
Wednesday, October 21, 2009
Hello!! Has it really been 40 days since his transplant??! It seems to have gone by sooo fast! And I guess that is a good thing. Only 20 more days until they do the engraftment testing. Remember that we want 100% donor cells and 0% Dylan cells--please pray for that. The doctors are confident that this will be the result, so that is very exciting. On Sunday I asked for you guys to pray that D would get off of oxygen soon....and guess what? NO MORE OXYGEN!! This is a huge praise once again. He hates having the nasal cannula in his nose and is always tugging on it and itching his face....so for now, it is gone!! Right now the struggle is eating. He seems to want to eat, but it often upsets his tummy and he ends up throwing it up. Monday he decided not to eat at all and just kept throwing up chunks of mucous. I know that sounds digusting, but its even more sad to watch. The poor lil guy just struggles and cries until he can get it out. He did that same thing tonight. Nothing seemed to make him happy and he just kept crying....and then finally...the whole once he got down earlier came back up. :( It's so frustrating for both mom and Dylan. I want so badly for him to be able to enjoy eating again and get back into a normal schedule. For now, until he starts eating regularly, the docs have him on hydration with vitamins, and are giving him steroids to make him a little bit hungrier. It's a trial and error time. Please pray that his tummy heals quickly and that he can soon eat normally and keep it all down. He gets so excited to eat sometimes, only to feel icky later. There is only so much of his sad cries that I can take...it's so hard :(
On a lighter note, he is growing well. His weight, along with fluid intake, is finally under control. He now weighs 15 pounds and is almost 25 inches tall. He is responding well to those around him and is flirting again with the nurses. He is opening his eyes more and more every day, but his left eye is a little bit lazy. We are hoping that this goes away with time--but it does not seem to bother him. Developmentally, he is pretty much like a newborn again--at least with physical strength. Before transplant, his legs were getting really strong, along with his neck and back muscles. Now, when you pick him up, it's like holding a newborn. He neck is wobbly again--I call him my little bobble head. He does not seem interested in using his legs at all and they are very weak. We know that he will have the rest of his life to regain his strength, but it is still very hard. The great thing is that he is still super cuddly and loves to snuggle!! Every time I start to get frustrated about something, he just flashes me one of his smiles and all of my worries go away!!
Well, I better get back to the munchkin, thank you for praying for our precious boy!!