Wednesday, September 30, 2009

Day +19...still going strong!







Good evening or good morning....whenever you happen to be reading this. We have some wonderful news about Dylan's counts...they are continuing to go up at a steady pace!! It is very exciting!! Yesterday he was at 900....and today he was at 1400!! God is really working in his little body...PRAISE GOD!! We still have a LONG road ahead of us, but we are on the right track.

Part of me, the mom in me, just wants to know for sure what the outcome will be. Will he be healthy someday? Will he have any problems? Will he survive this journey? But God reassures me that today has enough worries of it's own. I cannot worry about the future, about tomorrow, but I have to focus on today....as hard as it is. I would just love to know!! Ahhhhh!! So that was my little tangent for today. It is something that I have really been struggling with lately. I just want to know--for certain--if my baby is going to be alright, and survive this thing. All I know for certain, is that I have an ALMIGHTY, POWERFUL, LOVING God, who is watching over every tiny detail and in control of it all. I put my faith in Him. I believe that He is healing Baby D this very second-He is more powerful and more magnificent than I can even comprehend. Thank you Lord for taking care of Dylan!!!

Ok, well back to Dylan. He is doing 100% better than he was on Saturday and Sunday. His breathing is back to normal, but for some reason he still wants to hang on to that oxygen and does not want to give it up quite yet. We are hoping to be off by the end of the week. He is still sleeping a lot, but it is just his body's way of playing catch up. When he is awake, he is soooooo smiley!! And he even giggles every now and then. He is all smiles until I pull out the camera! HA! We have ruined him! He dislikes the camera very much and almost glares at it every time! It is quite hilarious! So I have to sneak in pictures when he is not looking...I wish you could see his BIG smiles!!

Well, I am off to bed. Please continue praying that Dylan's body keeps making progress daily and he can feel like himself more every day!! You guys are amazing prayer warriors and God is hearing each and every one of the prayers!! We love you!!

Walking by Faith,

Michelle, Erik & Baby Dylan :)

Tuesday, September 29, 2009

I could not sleep.....

I am at the Ronald McDonald House trying to get a good night of sleep, while Auntie Karyna is with my precious baby. I don't like being alone. I want to be with my baby, and I want to be with my hubby. I was having a hard time falling asleep....just thinking about everything, so I turned on my IPOD and started shuffling through songs...this one came up...one of my new favorites...HEALER, by Kari Jobi. I just got on my knees and cried to God....only He knows how I feel, and only He can heal my broken heart. Anyways, I hope that these lyrics might encourage you as they have encouraged me...with God, there are no limits.

YOU HOLD MY VERY MOMENT
YOU CALM MY RAGING SEAS
YOU WALK WITH ME THROUGH FIRE
AND HEAL ALL MY DISEASE
I TRUST IN YOU, I TRUST IN YOU

I BELIEVE YOU'RE MY HEALER
I BELIEVE YOU'RE ALL I NEED
I BELIEVE

AND I BELIEVE YOU'RE MY PORTION
I BELIEVE YOU'RE MORE THAN ENOUGH FOR ME
JESUS YOU'RE ALL I NEED

NOTHING IS IMPOSSIBLE FOR YOU
NOTHING IS IMPOSSIBLE
NOTHING IS IMPOSSIBLE FOR YOU
YOU HOLD MY WORLD IN YOUR HANDS

YOU'RE MY HEALER





If you get a chance, listen to this song sometime. It is absolutely beautiful!! He is our healer, and nothing is impossible for Him. Dylan is living proof! Goodnight.

Monday, September 28, 2009

Day +17.....a day of rest



Hello!! Today we are at 800 WBC!!! Woo hoo!! Way to go baby Dylan!!! He is doing so well with his counts....now all we need to do is to get the breathing thing down and we will be good to go!! Seriously, good to go.....out of hospital! That is the plan. Until then, Dylan will be working on breathing on his own.
Today he has done much better. His oxygen has been turned to a lower level and his breathing has been consistent throughout the day. His resp rate has been between 50-60 (we want it under 50), but he still needs the help of the extra oxygen. His little body is so tired from overworking itself the past couple of days, that he has been sleeping almost the whole day. He woke up during bath time, which is his favorite part of the day, but then went right back to sleep afterwards. Then he woke up this evening for about 30 minutes. And those were my favorite 30 minutes of the day. He was being really silly and REALLY smiley!! Such a blessing!! I think all of the smiling wore him out, because soon after, he started dozing off, and was quickly back asleep. We enjoyed every second of the awake time and will hopefully get some more time tomorrow. For now, we are thankful that his body is able to rest and catch up on some much needed sleep.
Thank you for your prayers tonight! Please pray that he can get off of oxygen completely, and breathe on his own. I can't wait to see what the counts are tomorrow!! It's so exciting!! God is creating new life inside of baby D....simply amazing!! Have a GREAT Tuesday!!

Love,
Michelle

New Layout, courtesy of Kelly

Hey Guys!! What do you think of the new layout? I wish I could take responsibility for it, but I cannot. The creative genius behind the creativity is Kelly Oxborough. She found our blog from another person's blog, and then volunteered her creative services to "spice" it up!! God provides in so many unexpected ways!!

Kelly also has a side business of her own where she makes affordable invitations for every occasion imaginable. I was looking at her samples online and they are beautiful!! So, if you have a need for invitations, check out her site.

www.yourlifelongmemories.com

Thank you Kelly for spicing up our blog! We love it!!

Sunday, September 27, 2009

Pampered Chef Fundraiser by Arlene Wilhoit

Here is some info from Arlene :)

Here is where you can help. By purchasing Pampered Chef products, you will help to raise money to cover costs of medical bills and so on . I know most of you may not know them, but they need all of our help! If there is any Pampered Chef item that you need, now is the time to buy it, even if its just 1 item. I will not be making any money from this (I will be donating all of my commission to them also), and this is truly being done to help the Praskins family.

There are a couple of ways to go about ordering.
1. You can email me your order and I will have it shipped directly to your house
-or-
2. You can visit my website. www.pamperedchef.biz/cooking4emma Choose "shop online" in the bottom left corner. You will be prompted to type in a name...Baby Dylan is all you need to put in.

I know that right now times are tough, so we need as many people to hear about this as possible. I need you to send this to everyone in your address book. Please ask everyone to continue to forward this on.

Sincerely,
Arlene Wilhoit
Your Pampered Chef Consultant
602-446-1461
cooking4emma@hotmail.com
www.pamperedchef.biz/cooking4emma

Without you I have no business in the kitchen!

Our tools will change the way you cook, and our business can help you live your dream!
Call our opportunity line for a pre-recorded message 1-866-837-8032 access code 1095577
AND THEN CALL ME

Day +16 ...still on Oxygen

Good evening everyone. Thank you for praying for us last night. It was a bad night. I think I just needed to cry and last nights events put me over the top. There's nothing as horrible as watching your baby fight to breathe. His respiratory rate got to be over 100 a few times, which is WAYYYYY higher than it should--normal should be around 50. His little lungs were working overtime all night long. This morning he was able to get a little bit of a respit after we sucked some huge boogies out of his nose. He is still congested, but not as much. The fluid overload is playing a big part in the labored breathing. His weight has gone down about 1 pound since yesterday afternoon and that has helped release some of the pressure. He is still very uncomfortable when he is awake. He has been on Adavan around the clock since yesterday and that has seemed to help him. He has to stay as calm as possible, or the breathing will just be intensified and harder for his lungs to keep up. With the help of the released fluids and boogies, Dylan seems to be stable at this point. His resp. rate is still high, around 70, but much better than 100+!

The good news from today is that his WBC is at 700!! We are so excited that his body seems to be responding well to the transplant (besides the breathing problems). We asked the Dr how he knows that it is the donor's cells reproducing and not Dylan's. He said that in the rare case that it happens, the child's WBC comes back much slower and would not be showing Dylan's numbers. He said that it would take at least 30 days to get to 400-500, so he is confident that Dylan's growth is from the cord blood. PRAISE GOD!! It's incredible how the human body works!! Absolutely amazing!! The Dr also said that if Dylan is stable in the next week and can get off of oxygen, then we can be released as soon as a week from Monday!! That would be AWESOME!! PLEASE pray that his body is able to release the mucous and fluids so that his breathing can get back to normal....that is a HUGE prayer request. We are hoping to have an uneventful night, full of sleeping!! We need it!! We are thankful for the wonderful nurses that we have here to take care of us! God has provided some really knowledgeable and fun people to take care of Dylan and not to mention his genious Dr and his staff!! We love you guys!! And we miss our St. Joe's nurses and staff....it's crazy how attatched you get to everyone....but I guess it's not a bad thing :)

I am going to be posting some info on a fundraiser and also a cancer walk if anyone would be interested. Details later to come. As always, Thank you for your love and support! I hope you had a great weekend and are ready for the crazy week ahead!! We love you all!! Even those of you whom we have never met ;)

PS...also be looking forward to a NEW LOOK to the blog! A wonderful woman, Kelly, has volunteered her serviced to make over the blog and it's going to be adorable!! Thank you Kelly....you are AWESOME!!

Under His Wing,

Michelle

Day 16: Labored Breathing

Dylan had a very rough night and continues to breathe very heavily.... his respirations are very high and the doctors are concerned that if it continues at the high rate, his lungs may give up and he would have to be intubated. Another chest x-ray was taken and his lungs are basically clear....so he doesn't have pneumonia. A respiratory therapist came in and sucked some more'buggers' out of his nose hoping that would help unblock his airway and help his breathing. A blood test was taken to check the amount of oxygen in his blood. Please pray that Dylan's body will calm down and that his respiration rate will reduce to the proper level so he will not overwork his lungs, forcing him to be intubated. We love you all.

Saturday, September 26, 2009

Day +15....movin on up!!!





Good Evening everyone.
Hi. This is Erik. Today has both good and challenging news. Dylan is having a hard time breathing today and is very restless. The fluids in his body are causing extra pressure on his lungs and making it difficult to breathe. He also has some mucous in his right lung. Please continue to pray that his body will handle the many fluids he is receiving and that he can breathe easier. It is a delicate balance of receiving the needed fluids without overwhelming Dylan's body. It is going to be another long night for Michelle as she cares for Dylan. The good news is that Dylan's white blood count is continuing to go up..... it was 0.4 this morning and went up to 0.6 this evening. Dr. Graham is very encouraged about this. We are praying that they continue to go up.

Friday, September 25, 2009

Day +14....quick update

Good evening everyone!! GREAT NEWS!! Dylan's WBC went up to .2 or 200 this morning!! This is a huge milestone! We serve an all-powerful and amazing God-and we praise Him for this victory!! This afternoon's blood tests showed his levels at 300, but that will most likely go down in the morning....but we will see!! Thank you for your continued prayer. Dylan is making progress and we could not be more excited about it!!
One more thing to add to your prayer list: Dylan may have an infection in his gut. Last night he was up all night with gas and painful bowel movements and those continued on throughout the day. He was pooping almost every half hour and every time he did, he cried in agony. The poor little guy was in so much pain. We were able to increase the morphine dose to help with the pain, but he still wakes up crying every time he has to go. They took samples today in hope of finding out what could be causing the irritation. They also put him on a medicine that will combat a common form of infection, C-Diff. Please pray that this irritation will go away quickly and that he is not in a lot of pain tonight. He really needs to get some good uninterrupted sleep, so that his body can heal.
Karyna is staying with Baby D tonight, so I have to make this short so I can get some sleep! Yay!! Daddy, Grandma, and Grandpa are coming tomorrow, so we will be having a fun filled day spending time with them. I hope to have great news about his counts tomorrow!! As always, THANK YOU THANK YOU THANK YOU THANK YOU for your prayers!! They are being answered!

Love, Michelle

Thursday, September 24, 2009

Day +13







Hello all! Well, I do not have any exciting news today :( This morning, Dylan's WBC was still at .1 like yesterday and went up to .2 this afternoon. It is normal for this to happen. The doctors do not get excited until they get the same numbers two times in a row. Sooooooo....let's just keep praying that tomorrow it will be at .2 or higher. There is no pre-set time when counts go up. Every person is different. We will just keep praying and praying, knowing that God is in control of every single little detail, down to the number of cells that grow each day-and HE is orchestrating it!! So for now, we trust that God is working in his little body. At day +60, they start to do engraftment tests to see if the transplant has worked. The tests will show how much of his cells are his, and how many are the donor's. We want them to be 100% donor and 0% Dylan. Until then, we wait for his counts to come up. We need prayer that he does not get GVHD (graft vs host disease), and that he can avoid all of the other complications that can come with transplant.

Today has been a good day so far. I was blessed by getting 10 hours of sleep last night!! OH WOW!! Thank you Karyna!! I was a new woman this morning and even dried my hair and put on make-up!! Woo hoo!! Karyna is awesome and storing up a lot of treasures in heaven!!
Dylan seems to be feeling better and has been smiling a little bit more. He received more platelets yesterday and is getting some more tonight. It is perfectly normal to get this many platelets after transfusion and he will continue to get the many transfusions until he starts to make his own platelets. Here's a fun fact for you--Your body makes new platelets for itself every 3 days. Did you know that? No wonder D has to get so many transfusions-he is getting someone's half-used platelets, and if his body does not like them, then it disposes of them and asks for more. I learn something new every day.

We will probably be staying in the hospital for another 2-4 weeks. Dylan will be healthy enough to get released from the hospital when his counts are stable and increasing....OH how I cannot wait for that day!! After we are out of the hospital, we will have to come in daily for clinic visits. The first two weeks of visits can last anywhere between 3-6 hours, depending upon how many medicines he needs and if he needs transfusions. Then from there, also depending on his status, his visits will get shorter and less frequent. We are hoping to be able to go home to Phoenix before Thanksgiving!! We will probably have to see Dr. Graham once a week for almost a year! So that means driving to Tucson once a week, every week, until next year. We have a LONG road ahead of us!! But as long as we have that road to travel, we will be happy :) That is a brief synopsis of the next few months and what may be happening...of course, all of this is subject to change. I am just excited to get out of the hospital!! Even though we will still stay in Tucson and I have to go back to the hospital everyday, we won't be living at the hospital, and life will be a little more normal.

Thank you to each and every one of you who gets excited everyday to see what God is doing in little D's life. It's amazing to see how God has used Dylan to touch the lives of others...and we love to hear the stories, so thank you for sharing them with us. We appreciate all of the love, prayers, and support that we receive everyday....you guys are amazing!! We love you!!

Not walking this road alone,
Michelle, Erik, and Baby Dylan

Wednesday, September 23, 2009

Day +12

This how Dylan likes to have his oxygen--airing out his forehead :) He is not a big fan of the oxygen and the little prongs that have to go in his nose, but he is doing a lot better with it than before.




Today is DAY +12......WOW!! I cannot believe it has been 12 days since transplant!! These past 12 days have been rough....they have been draining....they have been painful....but things are starting to get better!! On Sunday, Dylan's white blood cell count (WBC) was .05--which translates to 50. Yesterday, his WBC was at .1--which is 100! This was exciting to us, but the doc said that he would not be excited until he saw 200. We were hopeful this morning that we would get great news of his counts going up....but they were still at .1 or 100. When I heard the counts this morning, my heart ached and I was disappointed. I want so badly for him to start getting better, and get on the road to recovery. The doc says that most kids start to get their numbers up around day 14, but we were all hoping to see some improvement sooner. This evening, we got an answer to prayer!! They did some blood draws this afternoon and checked his counts again, and they were at 400!! WOOOOO HOOOOO!!! Unfortunately the doc did not believe the results so he had the lab re-run the tests. The second results came back in at 200!! We are still very excited about these results and are praying for even larger numbers tomorrow. If they do not change, we are still thankful for increase. We continue to pray that God will heal Dylan, and heal him quickly. It's going to be like Christmas morning, every morning, as I wake up, anxious to hear the results of the morning blood test. Please pray that tomorrow his counts stay at .2 or get even higher....that will be such a wonderful thing to look forward to! God has been so good to us. That news today was one of the greatest things that I could hear!

Other than the exciting news, today has been a typical post transplant day. Dylan seems to be doing better with each passing day. He continues to have trouble breathing because of the fluids, and has been on oxygen most of the day. He is finally realizing that he has to keep the oxygen on and has stopped yanking it off every five seconds. Now he only pulls it off every hour or so...he is pretty sneaky. His throat is healing well and the doc feels that he will probably be eating again next week! AWESOME!! It's so strange not feeding him all day...very strange. He is still having a lot of pain INSIDE his body. He is very sensitive to touch because of all of the fluids he is retaining, so I have to be very careful when I am holding him. He also screams in agony every time he has to poop. It's heartbreaking. This pain is coming from the sores that are INSIDE his GI tract. These will go away within the next couple of weeks as his body gets stronger, but it is quite painful for him right now. Please pray that we can get through the next week or two with as little pain as possible.

God gave me a HUGE blessing today--Dylan was laughing and smiling in his sleep...it almost made me cry!! He is infamous for doing this, but has not done it for a LONG time!! I am so thankful for the little things....and smiles are my favorite!! Although this is a very trying time for our family, it is teaching us a lot. God has taught us how to lean on Him for EVERYTHING, and I cannot imagine going through one day of this without Him. I feel thankful for so many little things now. I appreciate the little things now, and I notice them. I look forward to the simple things. Life is not all about me....it is about HIM!

Thank you everyone for all of your prayers!! I hope to have wonderful news for you tomorrow!!

We Love you!

Michelle, Erik & Baby Dylan

Monday, September 21, 2009

DAY +10.....and counting







Good evening!

Dylan is now on oxygen. He has been on oxygen on and off since yesterday at 2pm. The overload of fluids is making it difficult for him to breathe. If you think of the way you feel after eating a HUGE Thanksgiving dinner or after drinking a lot of fluids and multiply that by 10--that is how he feels. We have to be very careful of how we pick him up and how we position him. He will probably have to be on oxygen the next couple of days. Sometimes he does really well on his own, but as soon as he falls asleep, his levels drop. Please pray that his breathing continues to get better and it does not get worse. If the fluid gets to be too much for his body, it could leak into his lungs, and then we would have a whole other problem on our hands. Soooooo, let's just pray that does NOT happen. Dylan weighed in at almost 17 pounds today!! And 3 of those pounds are fluids....CRAZY!! The Docs are doing all that they can to limit and decrease the fluids, but they are all medicines that he needs. He is still on morphine, but at a lower dose, and that seems to be working. He has not gotten any more side effects and the sores that are in his throat seem to be getting better. For now, he is just extremely uncomfortable in his little puffy body....but it will all be better soon.

Karyna got into town today, and we were able to show her our new pad. We are so thankful and grateful for here being here! We are also thankful to Jalayna and Gary (Erik's other sister and her hubby) for letting us steal their babysitter.

Well, we have a long night ahead of us so I'm gonna get going. I'll update more later.

Thank you again for praying for our little guy,
Love, Michelle

Sunday, September 20, 2009

DAY +9






Hello Everyone!! We hope you had a GREAT weekend!! Erik and I had a WONDERFUL weekend away from hospital and were able to enjoy spending some much needed time together. I think marriage can be hard in normal circumstances, then add in a sick baby and months living apart from each other....it can be VERY stressful and difficult. We enjoyed a wonderful 4 course dinner at our favorite restaurant, The Melting Pot. If you have not been there, GO! It's well worth the money and very romantic and fun! We try to go at least once a year, but it is pricey, so we save it for special occasions...and this one fit the criteria! While we were away, Baby D was able to spend some quality time with my mom. We are sooooooo thankful to her for staying the weekend with him.

Now back to Dylan. Not too much has changed since Friday. He is still really swollen from the fluids. They have given him medicine to help him pee out some of the fluids. They are also trying to limit his fluids as much as possible, but he has a lot of medicines he needs, along with his TPN. He has also gotten a lot of transfusions since transplant. This is expected and completely normal, but the transfusions also add to the fluids. Since transplant on the 11th, he has gotten 2 blood transfusions and 5 platelet transfusions with another one tonight. WOW!! That is a lot of blood! (Thank you to all of you who donate blood on a regular basis!!) His throat continues to heal from the sores, but it's hard to tell since we cannot see them. He has been wanting his binky a lot more and seems to enjoy the sucking motion, so this tells us that his throat must be getting better. His tongue is less swollen, but he is still having trouble swallowing his saliva because it is so thick. This should be going away toward the end of this week when his counts start to come up. PLEASE, PLEASE, PLEASE, pray that his counts start to come up VERY SOON!! His body should be starting to reproduce cells around this time. They can see that his body is starting to reproduce, but only on a very small level, a level that the computer does not even detect. They may discontinue one of his antibiotics tomorrow if they do not see an increase. Sometimes the antibiotics can hinder the growth. The Doc is not worried about Dylan's progress as of yet and is hopeful that he will continue on track this week. Dylan's overall countenance is getting better also. He seems more happy and in less pain. He is still on a constant morphine drip, but it is at a very low dose. When we got back to the hospital today, Dylan woke up and gave Daddy and I some huge smiles!! We missed him so much this weekend and the smiles were a wonderful present!! We tend to take them for granted when he is feeling well because he smiles SO MUCH!! So during the bad times....every smile is CHERISHED!!

We have a big week ahead of us with a lot of recovering to do. Dylan has been such a trooper through this past week and a half, and we are really looking forward to having our happy baby back and for him to be feeling better. Please pray for a miraculously quick recovery!! With God, nothing is impossible!!

Walking by Faith,
Michelle, Erik & Baby Dylan

Wednesday, September 16, 2009

Day +5



We are at day +5!! I post the pictures, both sad and happy, to show you the reality that we are living in everyday. There are happy moments, and also very sad ones. I like to look back at the pictures and see how far God has brought us in this journey. We are now in a bad week.....a lot like his first week in the hospital. I was not sure how we were going to get through that first week. It was horrible and words cannot describe the pain that we experienced watching Dylan go through all of the tests, and pokes, and to face the truth about the cancer that was trying to take his life. BUT God had bigger plans....and he HAS bigger plans for our Dylan. We got through those weeks and the past few months leaning on God's strength, and we will get through this too!! D amazes me everyday with his strength and the love he has for everyone around him. We are excited to see what God has in store for him!!






These pictures show a few of the activities of Dylan's daily routine. Every day he gets a bath--and this is his favorite part!! Most of the time, he would be smiling up a storm, but for now, the smiling is saved for extra special times :) After bath, is dressing change time. This is NOT his favorite!! Because his dressing gets changed daily, they have a "second skin" bandage all around his lines so that the tape can stick to that, and not his skin. Even though they try as hard as they can to protect the area, it still gets irritated. After cleaning both lines, new bandages are put on, and the drama is over. He also gets mouth care every 4 hours. This is when they swab his mouth with a sponge with antiseptic on it to clean out his mouth to disinfect it as much as possible. He is not a big fan of mouth care time, but usually takes it like a man (or actually better than most men would! ha!). Those are usually the big events of the day....exciting huh! The rest of the day consists of relaxing, sleeping and cuddling....we like those parts!! So far, Dylan's side effects seem to be staying the same. He is really puffy (swollen) from all of the fluids he is getting--which you can probably see in the pictures. His little outfits that are usually loose, are a bit snug right now, but that will go away. He received another round of platelets tonight. That was his second round of platelets since friday, but it is not unusual to get a lot of platelets during the early stages of post transplant.

Erik's mom and aunt came to visit today! (also my mom and aunt, just easier to describe that way :) I was able to get another much needed nap!! OHHHHH how I am spoiled!! But they came just in time....because earlier that morning I was teetering on the brink of going delirious and looked like a walking zombie. Grandma wanted to save some of Dylan's hair so we could compare the color with whatever grows back--so the fourth picture is of Dylan's first haircut!! He did great! HA! I do not expect his hair to last through the weekend, but we will see! At least now we have a sample in a baggie :)

Friday is Erik's 29th birthday!! YAY!!! And for his birthday, HE has surprised me with a nice weekend at a resort in Tucson!! I told you I am spoiled!! The best part is that we will be only 8 miles away from Dylan....and not 3 hours away! I MAY be able to relax this time. My mommy is coming down for the weekend to spend some time with Dylan, and he is really looking forward to the one on one cuddle time!! We are so blessed to have our family close to us and to be so supportive!! WE LOVE YOU ALL!!

Please continue to pray that Dylan's pain will stay under control and that he can get through this week with as little pain as possible! Pray for strength for us who are taking care of him, because it is difficult to watch him suffer. Pray that he continues to avoid some of the worst side effects and that his body responds well to the new cells. Thank you for all of your love, support, and prayers!!

Love
Michelle

D is 5 months old today :)






Baby Dylan is 5 months old today!! Happy 5 months little guy!! This is not where we would ever think we would be at his 5 month mark.....BUT, he is HERE!! He is alive, against all odds, against the "statistics" and unknowns.......he is here and teaching all of us new things everyday!! He is persevering through the unknown...and why?...because he is in the hands of God....and God will never let go!!

HAPPY 5 Month Birthday Baby Dylan!! We love you soooooo much!!

Tuesday, September 15, 2009

Day +4.....time for a morphine drip






Good afternoon :) Today has been a rough day. Dylan did not sleep very much last night, but was able to get a couple straight hours of rest this morning along with mommy!! He is in a lot of pain. His little body is hurting him on the inside and it's so hard to tell what is wrong. He just whimpers, grunts, and cries...a cry that is almost unbearable to hear. BUT, there is a solution!! Morphine to the rescue!! He has been getting Morphine almost around the clock, so the Doc has decided to put him on a constant drip. It is a very small dose, but it is constant, so it should help keep his pain under control. If he is having a bad hour, he can get an additional dose to combat the pain. He continues to have thick mucous in his mouth and has not been coughing it up like before. Now we have to go in after it with the "sucker" (that's the technical term). Needless to say, he does not enjoy the sucker and fights it with all the energy he has. He is now hooked up to a pulse-ox machine constantly for monitoring(it is machine that monitors the oxygen in his body and his pulse). His breathing is affected by the mucous and we do not want the mucous to completely block his airway, so they have to monitor him closely. With the pulse-ox machine, Dylan is now connected to 11 cords!! Yes 11!! And that may not be the max. I will take a picture of the IV pole to show you guys on the next blog. It's amazing to me that all of those medicines and antibiotics are all working together to make his body better. It is an organized mess that comes with him anywhere we move. We call the IV pole his "friend". A friend that is always there, helping him sustain life. It also has all sorts of lights and glows beautifully in the dark so Dylan likes it! He is always mesmerised by it.

For now, Dylan is not eating anymore. He hardly even wants his binky. Along with the sores in his throat, his tongue is swollen, so it is hard for him to suck on anything. Every once in a while, he still tries to stick his hand in his mouth. He has been sleeping on and off for most of the day. He woke up a few times, but because of the morphine, he was still a little groggy. In the pictures above, you can see that his left cheek and eye are both really red and swollen. He has been rubbing his eye and cheek incessantly and it has caused a rash. We have been putting ointment on it every couple of hours, but it will not heal because his counts are so low. Please pray that his skin does not break on his cheek. His eyelid is already scraped up and will take a long time to heal. His hair looks like it is going to start coming out soon. Little hairs come out every time I comb my fingers through it.....but it's ok....he will grow it back and in the meantime, he will be sporting a cute bald head. Usually the eyelashes and eyebrows come out also, so we will see what happens. His little baby bum is still rash free!! Praise God!! We are sooooo thankful for this and we continue to pray that he can avoid this painful side effect!! The Doc said that the side effects should come to their peaks in the next few days and then we will start to see him getting better from there...we just have to make it through the weekend!

We got some really great news today!! My sister-in-law,Karyna, is going to be joining us next week!! WOOOOOOOO HOOOOO!!! We are sooooooo excited!! Now I will have a companion to talk to and hang out with and might be able to get a litte more rest :) She has such a servant's heart and we are blessed to have her help us out!!

Please continue to pray that the donor cells start to work with Dylan's body quickly and that they "get along" well!! After the cells start to engraft, then his body will start to make it's own blood products and he won't need as many transfusions. One little boy who is 14 months old is going home tomorrow and he is at day +21....so we are hoping and praying for the same type of recovery!! Or faster!! NOTHING is impossible with God!! We will not be able to go home-home, but at least to get out of the hospital :)
Well, I think that is all for now...I will leave you with the promises that God gives us in His Word....they help get us through every moment...and Erik's grandma was kind enough to write them out for us :)

I WILL...be your God
I WILL...love you
I WILL...rejoice over you
I WILL NOT...remember your sins
I WILL...pardon you, I WILL save you
I WILL NOT...forget you
I WILL...strengthen you
I WILL...bless you
I WILL...uphold you
I WILL...help you
I WILL...carry you
I WILL...hold your hand
I WILL...go before you
I WILL...go WITH you
I WILL...lead you, I WILL guide you
I WILL...hear you, I WILL answer you
I WILL...restore health to you, I WILL HEAL YOU!!!

There are many more, but these are promises from God...we hold tight to these promises.

Walking by Faith,
Michelle, Erik & Baby Dylan

Monday, September 14, 2009

Day +3

Hello from Tucson!! I had a GREAT weekend with my sisters and was able to relax....a little. I really needed to get away, but at the same time, it was so hard to be gone. I am thankful for the time I was able to spend with my best friends (my sisters), and we had a nice time at the hotel relaxing in the lazy river and being silly together.
We are now at day +3!! 3 days down....97ish to go....we are getting closer!! Day +1 went well. Dylan just slept most of the day and cuddled with Grandma. Day +2 is when the fevers started. He had fevers on and off most of the day and once it went over 102 degrees, they took blood cultures from each of his lines (they take the cultures to check for infections). So far, the cultures have been negative for bacteria, but we will find out tomorrow about the final verdict. The nurses were excited when he got a fever, which sounds strange, but a fever means that something is going on in his body. We need him to show some signs of side effects in order to know that the transplant is working and that the chemo did it's job. So in some ways, the more side effects the better. Regardless, we are still praying that his body is protected as much as possible from the painful side effects. He is showing some signs of mucouscitous. He has been coughing up huge amounts of thick mucous that has been getting stuck in his throat. It is hard for him to cough it up sometimes, but he always feels better afterwards. The chemo kills the cells in his saliva glands and it causes his spit to become thick and hard to swallow. The Doc thinks that the sores have probably begun to form in his throat. He has started to get small white bumps on the inside of his mouth that may be the beginning of mouth sores. His bum is still free and clear of any sores, rashes, or irritation--and we are praying that this is a side effect that he can escape, because it can be very painful, especially for babies, because of their diapers. He is still holding on to his hair--but that is expected to be gone in the next week or so. The Doc says that the side effects should plateau within the next 5 days, and then will start to get better from there. Now, we are just trying to get through each day with as little pain for baby D as possible. He is getting Morphine for pain and it seems to be working well to control the pain and discomfort, and allows him to sleep. He sleeps most of the day and night. He does not sleep quietly though, and wakes up often. He is a grunter. One of the night nurses calls him her bear. He is quite loud! But he is uncomfortable, and you can tell when he finally settles down, because the grunting quiets to a minimum. Because of all of this, sleep is....well....sleep is close to impossible at night. This is a struggle and a HUGE prayer request for me!! Last night I laid him in his bed a few times, but he could never get comfortable and it broke my heart to hear that "painful" cry of his. Soooooo he ended up sleeping on me or on the side of me most of the night. Please pray that I can sleep with him sleeping on me and waking up so often. God has truly protected me from getting sick over the past 3 months, and please pray that I continue to stay healthy, especially with the lack of sleep. I will try to post some pictures tomorrow, but I have to warn you that he will not be smiling in any of them. I think I have only seen his little eyes open once today, and he was definitely NOT smiling. It is heartbreaking and I am praying for a smile or at least a smirk tomorrow. Thank you for continuing to keep our family in your prayers....we need them, and appreciate it more than you can ever know!!

One more day down.....talk to you tomorrow!!

In His Grip,
Michelle

Friday, September 11, 2009

The Transplant is Complete!!





Thank you everyone for praying today!! The whole process was very anti-climactic :) They basically brought in a syringe of cord blood (that was previously frozen) and then it was given through his broviac. The nurse pushed in 60cc's over about an hour while I held Dylan in my lap. They had him hooked up to monitors to check his vitals every 10 minutes. His blood pressure went up during the transfusion, but that was expected. There was a short time when they put him on oxygen because his stats came down a little bit, but that was due to him being frustrated and crying. There is a preservative in the blood (since it is frozen until use) and it makes the recipients breath smell like creamed-corn. So while Dylan was getting his cells, he was breathing out the creamed-corn breath!! The whole room was filled with the aroma--it was quite strange, but interesting :) So if you would like to know what his breath smelled like, then open a can of creamed-corn and take a WHIFF!! Ha!! I know that some of you are going to do it! :) He is now resting comfortably on Grandma (Erik's mom) and is trying to get some sleep. He has only eaten once today and does not seem very hungry-so his eating days may be coming to an end for a while. He will be put on TPN (total nutrition through IV) tonight, so we will not have to worry about him eating.
THE NEXT STEP:
The next step is the waiting game.......wait.....watch....and pray. The new cells will start to engraft in about 7-10 days. That is when they will be starting to reproduce and fill his marrow with new healthy cells. The final goal is to have 100%donor cells and 0% Dylan cells. This whole process will take about 3 months to be fully grafted. The side effects will be coming soon-usually within 3-5 days. His mucous membrane throughout his GI tract will be stripped, and because D does not have an immune system right now, he will not be able to replace it. That is when the sores will come. On his bottom, his throat, and his mouth--this is unavoidable after transplant--so please pray that it is minimal. IF the sores in his throat get bad, they may have to intubate him and place him on a breathing machine or ventilator. If this is necessary, he will be moved to the PICU and will be unconcious for 4-5 days. He may get a rash, fevers, and nausea. All of these things are to be expected and will all be temporary. They will usually subside within the first two weeks. During this time, Dylan will not be able to have visitors because of his non-existent immune system. This is now the time for his body to start healing itself from the inside. Please pray that the cells engraft quickly and that his body does not reject the new cells and the new cells do not reject his body. They say that children, particulary babies, are very resilient and that he should recover quickly-and that is what we are praying for!! The battle is not over yet, and in a way, we have just begun. Today is day 0-and tomorrow will be day 1 post transplant. We cannot wait to get into the higher number of days!! Thank you everyone for being diligent in praying for our precious boy!!


In His hands every second of every day,

Michelle, Erik, and Baby Dylan

Inspiring Healing Video

We were emailed this video today and it was a very big encouragement as we prepare for Dylan's transplant. Check it out... http://www.tangle.com/view_video?viewkey=a5e697fe65e6e7bffa75

Copy and paste the link into your browser.

Transplant Day: Start of a New Life

Today is the day we have been waiting for…. TRANSPLANT DAY. All of the past few months of events have led us to this important date…. September 11th. In 2001, it was a tragic day that will forever be remembered in the minds of all Americans. Eight years later, we will be able to share this historic date with many.... But it will be the Start of a New Life for Dylan.

Even though it can be difficult to understand why Dylan is sick and even harder to watch him endure extreme pain and suffering, we know that God has a plan in all of this. A ‘perfect cord blood match’ has been found and we are praying that God will give our only son new life through this transplant. The months of chemo and the intense sessions of radiation have killed the leukemia and his body is now ready to receive the new blood. Dylan’s body can fight and try to reject the blood match but we know that God is the great creator of life, the sustainer, and the perfect healer... He is the one who makes that decision. As Abraham trusted and obeyed God, we trust Him and lay our precious son Dylan on the altar. We say, "God, Dylan is your child. We know you love him more than we ever can. We are thankful that you chose us to be his parents. We love you and trust you. We pray that you will use this blood to breathe new life into Dylan.”

Dylan’s battle with leukemia is a clear picture of our need for a ‘perfect blood match.’ Like Dylan, we all are born with a disease and it’s called sin. We are all on the path to eternal death and separation from God. However, there is a ‘perfect blood match’ and it will heal you completely and give you life; without it, you will die. It is only found in God’s only son, Jesus, who spilt his perfect blood and died on the cross for your sins. Through Him, we can have life and live it abundantly. When trials come in life, you can cling to God’s truth, and He will sustain you and lead you. This is the only way to have peace in life.

Thank you for your prayers and we look forward to what God is going to do!

Thursday, September 10, 2009

Night Before Transplant Day

Transplant Time is set for 1130am Arizona Time. It will take approximately 1 hour.
Michelle is busy taking care of Dylan tonight. Dylan has done well with minimal side effects from the many drugs he is receiving. We are very thankful about that. However, he is overly tired and screams whenever he is layed down; he is only comforted when he is held and cuddled. This is a major challenge for Michelle to get sleep. So you get to deal with me (Erik) this time. After thinking through the past many weeks, God has reminded me how he has sustained us in every situation. This process and trial is challenging us in every way imaginable…. It has challenged our personal relationship with God, our marriage, our relationships with our family and friends, our jobs, and much more; It is easy to look up at our huge mountain of challenges and say, ‘I give up.’ Being cooped up in a hospital cubicle room for months can drive a person crazy; being separated as young married couple and sleeping in separate beds for the entire process is very difficult and can feel like each spouse is living like a single parent; being responsible to sell Real Estate, in today’s down market, that is required to pay the monthly bills and provide for the family can be overwhelming; being away from the church body, family, and friends, creates a thirst for reconnection; unable to go on a relaxing summer vacation (when everyone else does) can bring jealous thoughts; trying to care for a sick infant who has greater needs than we can meet is exhausting………. But all of this…… to bring us to a place where all we can do is cry out to the only one who can meet all of our needs and who will lead us up and over this mountain; to remove all dependence upon our own power, thinking, and desires and place it completely on God; to put us in a position where we lay all of our sin, our fears, our needs, our finances, our challenges, and our precious Dylan on the altar and say, “God, all we have is yours. Dylan is yours. You are the Great Healer. We know you will provide. We love you and trust him to you.”

Tuesday, September 8, 2009

We are at day -3

Hello all!! Today we are 3 days away from transplant--YIKES!! So we are at day -3. Transplant day will be day 0, and then we will count up from there!! At the 100 day mark, if D doesn't have any big issues, we should be free and clear and 100% grafted!! And then the next big milestone will be the 6 month mark (when its very unlikely that he will relapse).....oh how I can't wait for that day to come!!

Yesterday was a rough day for D. He woke up feeling icky (he feels like he has a bad flu--just yucky all over!) He threw up everything he ate :( Poor boy puked on me twice and pooped on me once....oh the joys of being a mommy!! We had a long day of cuddling and with a little help with some morphine at night, he was able to fall asleep. Today was pretty much the same story. He is not himself, and just feels yucky. He got some more platelets today and also a blood transfusion. The doc switched him to a soy formula and he was able to keep down two bottles today, but he could not keep dinner down :( He is now sleeping comfortably and hopefully has a good night sleep. The good thing is that he still has a rash free bum and there are no signs of sores in the mouth! Thank you Lord for that!! Most kids stop eating after receiving the chemo drug that he got today....so we will see.

Tomorrow and Thursday D is getting a drug called ATG. This drug will attack the cells in his body that cause the graft vs host disease and will hopefully cut down on his risk for it. To refresh your memory, GVHD is when the donor cells reject Dylan's body, and start to attack his system and cause problems. The doc says that he has a good chance of not getting GVHD because he has a 6 out of 6 match, so that is good news to hear. But we just have to take one day at a time and not worry about things that are out of our control.....easier said than done.

Erik's parents are going to be coming down for the transplant on Friday and staying with Erik and Dylan for the weekend. I am going to be going back to Phoenix Friday night for a MUCH needed girls weekend with my sisters and soon to be sister in law. We are hosting her bridal shower on Saturday, and then the girls are off for a wild night on the town....ok, maybe not so wild, but it will be fun times! I am excited to get away for a couple of days, but the mommy in me does not want to go. I have to override those instincts so that I can stay sane through the next couple of months. I need this, AND IF anything happens that I need to be there with my Dylan, I am only a couple of hours away :)

Please pray for Dylan's body as it gets ready for Friday's transplant. Pray for us as we are getting ready for the big day physically and emotionally. When we know what time he is getting the transplant we will let you know--that way you can pray during that hour. We always remember September 11th, and now we definitely will never forget it!! As we mourn and pray for the families who lost their loved ones, we rejoice that Dylan will be getting "life giving" cells. It will be a day we will NEVER forget. In hind site, we are thankful that this whole process is a short one. Right now, in the moment, it seems like FOREVER, but it really is a short period in time.....and he can be completely healed and the cancer in him can be gone....100%!! That is so amazing to me!!

Until tomorrow.....

Love you all!!
Michelle

We finally caught a giggle on video!

video

Sunday, September 6, 2009

We love our smile machine!



No news.....is GOOD news!!






Good evening!! Hope everyone has had a wonderful weekend so far and you get to spend time with the ones you love! I know I did! Mellissa, Mandy, and Josh came down here yesterday and left today once Marky and Renee got here. It was great spending time with everyone and they got to spend some good playtime with Dylan. I love my family and I am so blessed to be so close to them all!! Now, we are alone again.....:( but for a good reason. D needs to be around the least number of people as possible right now until after the transplant has had time to graft--which should be a few weeks after the transplant. Then his system should start making its own platelets and white blood cells. For now....we will be laying low...but thank you to everyone who wanted to come down for a visit....we will definitely take a raincheck!!

Dylan is doing very well with the chemo...and he has been getting a lot of it. So far, he has had no side effects, and is staying his happy self!! It's hard to believe that we are now killing off all of his bone marrow--all of the cells that create new cells....and then the good cells will be injected into him on Friday. Thank the Lord for doctors and medical science!!

That is all for now....more updates to come....love ya!!

Friday, September 4, 2009

He Gives Strength to the Weary

“Do you not know? Have you not heard?
The Everlasting God, the Lord, the Creator of the ends of the earth
Does not become weary or tired. His understanding is inscrutable.
He gives strength to the weary,
And to him who lacks might He increases power.
Though youths grow weary and tired, And vigorous young men stumble badly,
Yet those who wait for the Lord
Will gain new strength;
They will mount up with wings like eagles, They will run and not get tired,
They will walk and not become weary.”
Is. 40:28-31 NASB

Our little chubbers...