Sunday, August 30, 2009
Tomorrow is Day 1 of Radiation
Hello everyone!! We have had a very uneventful weekend--just the way we like it! D has been having fun just being himself and he got to play with Mema and Papas and Auntie Ariel on Saturday (my mom and her husband and his daughter). And while they were playing with Dylan, mommy (that's me!) got to escape to get a pedicure (my form of relaxation) and a much needed nap!!
Tomorrow is Dylan's first day of radiation. He will be having two sessions tomorrow, the first at 7am and the second at 2pm. He will be getting anesthesia before each session, so it's going to be a LONG day! And then we will repeat that for the rest of the week. Please pray for Dylan because they do not do radiation on infants his age very often. Pray that the radiation does it's job (to kill the cancer cells) and spares his body from its harmful side effects. We are trusting that God has given the doctors the wisdom on how to take care of Dylan, even though some of the processes are scary. We our on our knees every night praying that God heals our baby boy and we thank all of you for joining us in our plea. He is the world to us and anyone who is a parent can understand the way we feel! Please continue to pray for wisdom for the doctors and for patience and peace for us. We love you!!
Under His Wing,
Michelle, Erik and Baby Dylan
Friday, August 28, 2009
6 MORE Beads Please!!
Blood Transfusion (thurs night).....CHECK!
MRI......CHECK!
SPINAL TAP.....CHECK!
CAT Scan.....CHECK!
Radiation Simulation....CHECK!
Redo of first CAT Scan...CHECK!!
6 more beads please!! Yikes!! Today has been jam packed with all sorts of tests, and D did a great job through them all! The morning started at 4am (thats when D woke up starving) and then we came back for a nap from 12:00-2 and then back out for more fun and we ended that at about 5:30....or at least that is when we got to our room. D is still passed out from being sedated earlier. I am a little afraid of not getting any sleep tonight. Good thing my mom will be here tomorrow to rescue me and give me a little break. He was a trooper through it all, and he even managed to still charm everyone even when he was soooooo hungry. Its amazing the impact that he has on everyone around him! People just gook and gawk at him all of the time and everyday there are new nurses in here trying to get a peek at him! And he loves every minute of it! Erik and I have been blessed with an amazing child! With all that he goes through everyday, everyone is amazed at how happy he is! And he is happy...all of the time!! Always smiling and talking....and I could stare at his beautiful face all day long! Everytime that I get frustrated with medical things or afraid of the next procedure, God reminds me that he picked Erik and I to be Dylan's parents. He was smiling the day we found out I was pregnant knowing what the future held for us, knowing that we would grow more than ever thought, and knowing that our hearts would be filled with so much love for our little Dylan. There are no surprises to God....and we are blessed to be chosen by Him to raise our precious baby! I just had to share that with you! Ok, enough mushy stuff for now....I better go wake the sleeping beauty and get him some food....so goodbye for now!! We love you guys!!
Under His Control,
Michelle
2 Corinthians 1:3-4
The God of All Comfort
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
MRI......CHECK!
SPINAL TAP.....CHECK!
CAT Scan.....CHECK!
Radiation Simulation....CHECK!
Redo of first CAT Scan...CHECK!!
6 more beads please!! Yikes!! Today has been jam packed with all sorts of tests, and D did a great job through them all! The morning started at 4am (thats when D woke up starving) and then we came back for a nap from 12:00-2 and then back out for more fun and we ended that at about 5:30....or at least that is when we got to our room. D is still passed out from being sedated earlier. I am a little afraid of not getting any sleep tonight. Good thing my mom will be here tomorrow to rescue me and give me a little break. He was a trooper through it all, and he even managed to still charm everyone even when he was soooooo hungry. Its amazing the impact that he has on everyone around him! People just gook and gawk at him all of the time and everyday there are new nurses in here trying to get a peek at him! And he loves every minute of it! Erik and I have been blessed with an amazing child! With all that he goes through everyday, everyone is amazed at how happy he is! And he is happy...all of the time!! Always smiling and talking....and I could stare at his beautiful face all day long! Everytime that I get frustrated with medical things or afraid of the next procedure, God reminds me that he picked Erik and I to be Dylan's parents. He was smiling the day we found out I was pregnant knowing what the future held for us, knowing that we would grow more than ever thought, and knowing that our hearts would be filled with so much love for our little Dylan. There are no surprises to God....and we are blessed to be chosen by Him to raise our precious baby! I just had to share that with you! Ok, enough mushy stuff for now....I better go wake the sleeping beauty and get him some food....so goodbye for now!! We love you guys!!
Under His Control,
Michelle
2 Corinthians 1:3-4
The God of All Comfort
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
Thursday, August 27, 2009
Big Day Tomorrow
Hello!! Today has been a day of smiling, laughing, kicking, cuddling, playing and fun with the kiddo!!(and a few naps in between) Thank you Lord for these days!! Tomorrow is going to be a big day of tests!! It will all start at 1am--that is the last time D will be able to eat for a LONG time! We will be wheeling down to the OR at 7:00 am to get anesthesia....again. Then he will be getting a special type of CAT scan that will measure every nook and cranny of his little chubby body so that the radiologists have all of the information for his radiation next week, and then he will get another spinal tap with Chemo, AND THEN, an MRI....phew....that was a mouthful!! ANOTHER 3 beads please!! (if you don't know what that means, read the posting before this :) They also have to do another measuring test on a special machine for the radiologists that they are going to try and get done at the same time. If they cannot get it done in the morning, he will have to be sedated yet again around 2pm. And that means, no food still!! So please please pray that they can get ALL of the procedures done within that time frame and that he only has to go under anesthesia once tomorrow :) He is always so sad and cranky after these things and I hate for him to be out of order all day long :(
Please pray that his MRI comes out normal and that the radiologists are able to get all of the measurements that they need! Thank you for the prayers and I will update you tomorrow on how everything went!!
Courage Beads
I have had a few people say that Dylan deserves a medal for all he has been through :) Though he may not get a medal, he will have a "Courage Bead" necklace. (or maybe a couple of them!) We signed up for a program through Tu Nidito that gives Dylan courage beads for every big procedure he goes through including: blood transfusions, surgeries, Xrays, MRI's, Spinal Taps, Radiation, CAT Scans, stays at the hospital, loosing hair, TPN, Chemotherapy....ect. So far, he has 39 beads!! Yikes!! He is going to have a nice collection of courage beads and it will be a neat way to tell him someday about everything that he went through and how God was holding him the entire time!
If you want to learn more about the program or just check it out, you can go to tunidito.org
Here's a pic of his necklace so far!! Each bead stands for a different event. :)
If you want to learn more about the program or just check it out, you can go to tunidito.org
Here's a pic of his necklace so far!! Each bead stands for a different event. :)
Wednesday, August 26, 2009
Chemo today, rest tomorrow
Hello Everyone!! Dylan had some chemo today to "hold" him over until transplant week. He will not get the high dose chemo until the week of transplant. The plan for now is to rest tomorrow and then on Friday he will get another spinal tap to check for the leukemia and also an MRI. They want to do another MRI to double check the small masses that showed up in his last MRI about 2 1/2 months ago. (as of last MRI they thought the masses were clumps of white blood cells, so those should be gone) He has had a good day today. He has been in a great mood all day and has been all smiles! He is such a flirt with the nurses!! His day consists of eye drops every 4 hours to avoid some side effects of the new chemo drug; mouth care, which is when we clean out his mouth with a little sponge--he doesnt like it too much, but it will be a necessity once the mucus in his mouth starts to get thicker due to transplant. He also gets bathtime everyday, and he loves it! After bathtime comes the not so fun part of getting his dressing changed, but as soon as it is over he is happy again. Erik's mom and dad were able to come out and visit today too so that was fun! They even gave Erik and I time to go back to the Ronald McDonald house for a much needed nap!! We both passed out for 2 hours of much needed sleep! Erik is driving back home tonight and will be back this weekend. Until then, its just me and Dylan :) My mom will be out on Saturday so I am looking forward to that! Its hard being so far away from everyone, so visits from family are much needed!! I even had VERY unexpected visitors Monday night!! My brother Mark and his fiance Renee thought I sounded sad and decided to make the 2 1/2 hour trip out to see me!! they were sooooo sweet!! They were only able to stay a couple of hours, but it was an awesome surprise!! (crazy kids!!)
Thank you everyone for your encouraging words and prayers!! And we will talk to you tomorrow!! :)
Love Michelle
Thank you everyone for your encouraging words and prayers!! And we will talk to you tomorrow!! :)
Love Michelle
Tuesday, August 25, 2009
Pic 1-Dylan fell asleep with Daddy last night.
Pic 2-D got his first bath, we had to get off all of the surgical soap and he enjoyed splashing around a little
Pic 3-This is what his ports look like all uncovered. The one on the left is the double broviac. We had to take the dressings off because he cannot have them during radiation. Any areas of the body that have tape residue on them are susceptible to getting a rash as a result of radiation, so we are going to try to get all of the residue off and let his skin breathe. In leiu of the dressings he has gauze over his sites and is wrapped like a little mummy. It looks like he is wearing a little sports bra of gauze. So now we have to be extra careful not to pull on the lines so that they do not come out. (kinda scary!)
Monday, August 24, 2009
First Day at UMC
Isaiah 41:10
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand."
Hello!! We have had a fun filled day in Tucson. Well, maybe not fun, but we got a lot accomplished. Dylan went in for his broviac surgery at 9:30 and everything went well! The docs were able to place a double broviac in his chest, so now he has 3 separate lines that they can access at any time. As you can imagine, 3 cords hanging from a baby's chest almost seem like a fun play toy--so we have to be very careful that they are covered up. During the broviac surgery, they also did another intrathecal spinal tap. They put some more chemo drugs into his spinal fluid and took a sample of the fluid as well. AND THAT IS WHERE THE BAD NEWS COMES.....when they looked at the sample, they found a small trace of leukemia. This comes as a surprise and leaves us with one of two options. Option one is to not do anything and go on with the transplant and hope that the strong chemo drugs kill the remaining leukemia. Option two is to do radiation. After talking to many specialists, Dr Graham has decided to do the radiation. This is something that he is normally against because he believes that transplants can be done without them, but in this case, it will be the best thing to be sure that the leukemia is killed before they start the transplant. This is just one more scary thing that we have to put Baby Dylan through and is something that we definitely did not plan on. Again-we are NOT in control and believe that God has a plan in everything. The specialists that Dr Graham talked to have never done radiation on a patient as young as Dylan. In patients over 6 months old, there have not been any major side effects recorded so they are hoping that is also the case for Dylan. In some cases, kids have shown to have a lower IQ than others. We are not worrying about that and know that God will protect our precious baby. Please pray for us as today has been a whirlwind of events and not-so-good news. We know that we have to continue to take it one day at a time and that God will give us the strength to get through each day....each hour. Dylan is in a little bit of pain right now because of the surgery and is groggy and grumpy. But he did manage to flash us a few of his adorable smiles--so mommy and daddy are happy!! Please continue praying that his body can endure the hard road that is ahead of him. With the new treatment of radiation, his actual transplant will be pushed back about a week. He will have radiation 2x a day for 4 days, and that will begin next week. Every time he gets the radiation, he will have to go under anesthesia (yes, 2x a day!) and that in itself proposes a risk. He also cannot eat 6 hours prior to anesthesia, so those 4 days are going to be VERY TOUGH to say the least. I have to admit that Erik and I are very disappointed that he has to get this and it is hard for us to consent to, but we know that it is the best thing for Dylan in the long run. Please pray for us as our hearts are heavy with many emotions and fear of the unknown. Tomorrow Dylan will be resting and we will find out the plan for the rest of this week. Please continue to send emails of encouragement and verses as those help out immensely!! You all are such an encouragement and a support to us! Thank you!
Saturday, August 22, 2009
Tucson Tomorrow
Hello everyone, we leave for Tucson tomorrow afternoon! We are excited, scared, anxious, afraid of the unknown, and giving all to God--because I cannot deal with it!! We know that this is a means to an end and are so thankful that God has provided a way for Dylan to get better. The process is not going to be easy and will be painful for Dylan physically and painful for us emotionally, so please keep us all in your prayers. I am keeping this short because D is sleeping and I need to follow his lead! Have a great Sunday!!
Tuesday, August 18, 2009
Enjoying our time at home
Hello everyone! We have been having a GREAT time at home!! Dylan is doing AWESOME and has not had any fevers and has been able to be a normal baby for the past week and a half! We are loving it! I am only reminded of his cancer when I flush his broviac in the mornings, or when I give him baths. He seems so healthy and happy, and we are so thankful for this short time of health. He is such an awesome little boy. He is back onto a schedule at night which is great for me, because I now get a little bit more sleep (just a little bit), and Dylan is rested and ready for his day! We have lots of play time, lots of cuddle time, and ......lots more cuddle time. We got the go ahead from the doctors on Friday to take him up north to Flagstaff for the weekend!! It was a much needed respite for the family. My sister lives there, so we had a great time hanging out with family and just relaxing in the cooler weather! 40 degrees cooler to be exact!! We also took our dog Lily with us, so it was truly a family vacation. We were so thankful to be able to get away for the weekend before embarking on the stressful journey ahead of us. We still have a full 5 more days of "normal" life and we will enjoy every second of it! We have a few specific prayer requests that we would love for all of you to start praying for:
1. My knee: I got reconstructive knee surgery 3 years ago, and now my arthritis in my knee is acting up and the muscles in my knee are weak and now it is hurting and popping all of the time. I saw my knee doc today and he said that sitting on my bum for 2 months in the hospital has hurt me, and I need to strengthen it--not so easy to do in our situation, but I have to do it! So please pray that the pain goes away and that I can carry Dylan around without the fear of falling, and that I can make it a priority to strengthen it while in the hospital with Dylan.
2. Dylan is getting surgery Monday morning at 9:30am. He will be getting a double broviac that will be placed on the right side of his chest. He already has a single broviac on the left side. This will mean that he will have 3 lines coming out of his tiny little body. Please pray for precision for the surgeons and that his tiny veins will have enough room for the double broviac.
3. Chemo starts Tuesday. VERY STRONG CHEMO. And with that chemo comes side effects. Please pray that the side effects are mild or non-existent. They can be horrible and it is going to be difficult to watch our baby suffer through this.
4. The actual transplant is the following Monday on Aug 31st. Please start praying that Dylans body will not reject the transplant and that the transplant does not reject Dylan. He will be on a lot of anti-rejection meds to avoid this, but it is always a possibility.
5. Pray for us as a family. The next two months are going to be rough to say the least. Things have been so nice for the past month and we are going to have to go back to the scary stuff. Please pray that we do not let Satan into our heads causing any kind of doubt of Who is in control. Pray that we go to our Creator with every fear, anxious thought, or worry. He is in control and we are waiting on Him to heal our Dylan.
Those are just some specifics for right now :) I also would like to ask for your prayer for two little ones that we have come to know through Dylans sickness. I have mentioned both of them before in the blog. First there is little ZOE. Her family has decided to wait on the Lord to see if her tumor goes away. They have been instructed from many doctors to do the same because her type of cancer can sometimes go away on its own. As you can imagine, this is a terrifying situation for them as they have no control over the situation. Please pray for baby ZOE. She is 5 months old. The second child is baby BRADY. He is the little boy who was diagnosed with AML Leukemia at 8 weeks old, just like Dylan, and is now a year old. He went through a transplant in February through an adult donor. He is now 5 months out of transplant and his leukemia is back. This is our worst nightmare. He now has to go through the entire process again. Please pray for his fragile body and his parents.
We are very hopeful for Dylan's transplant, but we are also aware of the risks. It is a dangerous procedure and we are not guaranteed anything. We know that this is the direction that God is leading us and we are walking blindly by faith knowing that God has His hand in EVERY detail. We are beyond thankful for your support and your prayers and we know that our Heavenly Father is listening to our cries to heal our Dylan. We love you all so very much! I cannot wait for the day to show Dylan how many people are praying for him and how many love him so much--many of you who have never even met him or us--THANK YOU TO ALL OF YOU!!
In His Grip,
Michelle
Thursday, August 13, 2009
Hello! We had a really great trip to Tucson! Dylan did not understand why he was stuck in the car seat for so long, but he got used to it after a while. He got to get a lot of stuff done. First some blood tests, then an X-ray, then an echo cardiogram, and finally an EKG! He did awesome through all of the tests! Just a few moments of crying, but overall, a super trooper!! The lady doing the EKG was amazed that he just sat there while she placed all of the little markers on him! She said that he was the most behaved baby she has dealt with. What she did not know is that he got out all of his frustration earlier with the woman doing the echo. :) But I was very proud of him. Erik had a rough day too. While Dylan and I were going all over the hospital for tests, Erik was watching the DBacks game & sleeping in the outpatient room!! Yes, a rough day indeed :) We were able to meet some of the staff that will be taking care of us and also got a lot of one on one time with his bone marrow doctor--DR. Graham. We are very happy with our decision to go to Tucson for the transplant. God definitely confirmed our decision while we were at the hospital yesterday. Dr. Graham is an amazing doctor! He is probably one of the most intelligent people I have ever met. While talking to him, he was telling us about all of these studies and journals about leukemia and their results like he read them just yesterday. How someone can have that much information in their head and remember every detail is beyond me, but we are thankful that God has blessed him so much. He told us that as long as everything goes as planned, he thinks that Dylan should have a very successful transplant. He was very encouraged by the way Dylan's body has responded to chemo so far and thinks that he is a perfect candidate for transplant. Also, if all goes well, we can expect for things to be relatively back to normal by the time Dylan is a year old!! What an amazing and encouraging thing for Erik and I to hear!! Praise God!!
WHATS NEXT? We have about another 10 days at home and then we are headed to Tucson on the 23rd. He will have surgery on Monday morning to get another Broviac put in to help with all of the medicines that he will be getting. Then, chemo starts the next day and will continue for 5 days. Then he will have a day of rest on Sunday, and then the transplant will happen on Monday the 31st. That day will be the beginning of everything! They count the first day of transplant as day 0. Then every day after that up to 100. After 100 days, if everything is going well, then we will most likely have a successful transplant. There is a chance of the leukemia coming back, but if it does not come back within the first 6 months, then it is unlikely to come back after that. I cannot wait for that 6 month mark!! I know that is a lot of information in one blog, so I will stop here and tell you more later!! Please pray for these next 10 days that Dylan continues to be healthy and not have an fevers and does not get sick. His white blood cell count is still really low, so we are not really taking him anywhere and are very careful with visitors, especially children. Thank you so much for your prayers and support! We are encouraged everyday by the overwhelming love and support from everyone around us!! Thank you!!
Tuesday, August 11, 2009
Home Sweet Home
Hello everyone! We have had a great 2 days at home so far! We left St. Joes yesterday at noon and have been enjoying the comforts of home for a whole day and a half so far!! It was sad to leave our hospital "family" and they will all be truly missed! The nurses were so sweet! All of them came by the room to say goodbye and give hugs and kisses to Dylan. One of our favorites, Chrysta, even came by on her day off to say goodbye! I am sure we will see them all again, I just do not want it to be soon :)
We are off to Tucson tomorrow to get some testing done on Dylan. He will be getting some blood work done, along with an EKG and some other tests. They want to see how strong his body is to make sure that he can handle the bone marrow transplant. We are confident that he will pass with flying colors!! He is such a strong little guy! Please pray for a safe journey down to Tucson and that all of the tests go well. We will also be getting a game plan for our move down there and will get to see where we will be moving for the next few months. We are looking forward to a family day on the road and I am looking forward to hitting the outlet malls on the way back!! Of course I will just end of buying more baby stuff for Dylan, but I cannot resist. We will update the blog by Thursday with all of the new info! Thank you for your prayers. Dylan is doing well with no signs of any sickness besides crabby baby syndrome!! I guess we will take that :) Oh ya, and he laughs now too!! He has been laughing in his sleep for the past week, but I heard him laugh out loud when he was awake on Friday! He laughed at our nurse Melanie! I guess she is way funnier than mommy, because I cannot get him to do it again! HA! But then this morning, he was laughing at Josh (my sister Mandys boyfriend)! I guess I just need to work on my funny faces! But I'm sure I'll get a laugh someday soon!
Talk to you guys later!!
Love Michelle
Enjoy the pics!!
Saturday, August 8, 2009
2 More Days at St.Joe's
Hello everyone!! We have had a pretty eventful day here at the hospital. We had a lot of visitors and Dylan got to spend some time with his auntie and uncle and Mema and Papas. He also decided to pull out his feeding tube once again, causing him to gag and throw up all over daddy! Poor Daddy! We are going to try and leave it out tonight and see how it goes. As long as he eats well, we should be able to leave it out for a while. After puking on daddy, he decided to pee on mommy--what a little stinker!! I have been officially initiated the Dylan way! Ha! At least I made it a whole 4 months :) After the pee incident he decided he was not done getting me dirty. He was "starving" so he ate 3 ounces of food and then proceeded to throw it all up on me when I was burping him. The funny part is that he pulled back his head and then face planted in it! It was so sad and so hilarious at the same time, so we had to take a pic! He just needed a rice cereal and formula facial!
We have exciting news! We are scheduled to be discharged from St.Joe's on Monday!! (pending no drama) YAY!! We are very excited to start the next chapter in this journey of ours. It will be bitter sweet leaving this hospital. We are REALLY going to miss our nurses!! We have had the pleasure of being taken care of by the most amazing nurses! We are so thankful to each and every one of them! They truly made our stay here as positive and enjoyable as possible. They loved Dylan as if he were their own, and were a comfort to me during this stressful and emotional time. THEY WILL BE MISSED!! I wish I were a millionaire and I would hire each of them to come down with us to Tucson--That would be AWESOME!! I am sure the nurses in Tucson will be great too, but its going to be hard to leave our St Joe's nurses :(
So the "PLAN" is to be discharged on Monday. Then Tuesday we will enjoy the day at home, and then Wednesday we will head to Tucson for the day. We have an appointment at 10am on Wednesday to have Dylan go through a series of tests to make sure he is healthy enough to go through the bone marrow transplant. We will also get a more specific plan of when the whole process will start and also get to stay at the Ronald McDonald house overnight to see where I will be living the next few months. We are very excited to start the process of the bone marrow transplant and to see our little man get better. Please pray that we do not get anxious and start to worry about all of the details and the scary unknown, but that we take it one day at a time and trust God with every day and every detail. As always, we thank you all for your dedicated prayers and we are definitely feeling the effects of them! Thank you! Love Michelle
We have exciting news! We are scheduled to be discharged from St.Joe's on Monday!! (pending no drama) YAY!! We are very excited to start the next chapter in this journey of ours. It will be bitter sweet leaving this hospital. We are REALLY going to miss our nurses!! We have had the pleasure of being taken care of by the most amazing nurses! We are so thankful to each and every one of them! They truly made our stay here as positive and enjoyable as possible. They loved Dylan as if he were their own, and were a comfort to me during this stressful and emotional time. THEY WILL BE MISSED!! I wish I were a millionaire and I would hire each of them to come down with us to Tucson--That would be AWESOME!! I am sure the nurses in Tucson will be great too, but its going to be hard to leave our St Joe's nurses :(
So the "PLAN" is to be discharged on Monday. Then Tuesday we will enjoy the day at home, and then Wednesday we will head to Tucson for the day. We have an appointment at 10am on Wednesday to have Dylan go through a series of tests to make sure he is healthy enough to go through the bone marrow transplant. We will also get a more specific plan of when the whole process will start and also get to stay at the Ronald McDonald house overnight to see where I will be living the next few months. We are very excited to start the process of the bone marrow transplant and to see our little man get better. Please pray that we do not get anxious and start to worry about all of the details and the scary unknown, but that we take it one day at a time and trust God with every day and every detail. As always, we thank you all for your dedicated prayers and we are definitely feeling the effects of them! Thank you! Love Michelle
Thursday, August 6, 2009
Chemo is over.....for now!
Hello friends and family! We hope you are having a great week!! We are having a good week here at the hospital. Dylan is 16 weeks old today, but Daddy said I cannot say he is 4 months old until the 16th, because he was born on April 16th and he doesnt count in weeks like me! HA! Regardless, our little man is getting older!! We are excited that Dylan finished his last chemo treatment from St. Joes yesterday!! YAY!! Praise God for answering our prayers! Its not the end of chemo, but its the end of one journey to begin with another in Tucson!! Dylan is doing surprisingly well with the chemo--well, it does not really surprise me because he is such a trooper and has the power of God behind him! He has not gotten any side effects besides a little bit of throw up, and his bum is rash free!! No sores in the mouth and most of the hair is still in tact! GO DYLAN! He does kind of have an old man hair do on top, but not sure if its from chemo, his head getting bigger, or just normal baby hair loss--whatever it is, he is still stylin! He is gaining weight well and is about 12 1/2 pounds now! Although he has not been feeling well the past few days, he has not lost his spunk. He is still a kicking and smiling machine and for that, we are truly thankful :)
God has done some awesome things this week and I want to share a couple of them with you! I mentioned before that I was praying for a friend to have down in Tucson because I would be alone a lot during the week because Erik has to stay home for work. Well, God has provided a friend!! A sister, actually!! Erik's sister Karyna is going to selflessly give up her time to come and spend it with me and Dylan! I was sooooooo surprised and I cannot wait to build our friendship and have a companion while we are away!! That is PRAISE #1. Praise #2 is that God has provided another 3 months of leave from work for me! At first I was told that I would only get approved for 1 month at a time. My first month was coming to an end and we were all anxious to see what the verdict was for the second month, and we were approved for an additional 3 months!! Such an answer to prayer and one less thing to worry about :) As an employee I am eligible for 6 months of unpaid personal leave and so far I have taken 1 month. Please pray that I can get approved for the whole 6 months! That would give me time off until January, and then hopefully Dylan will be healthy enough for me to go back to work part time. God does amazing things when you give it all to Him and stop trying to take care of it on your own. Why do I even try sometimes? We are thankful that we are able to see God providing so tangibly and are looking forward to what the future holds. Thank you so much for all of your prayers and we will talk to you later!
Love,
Michelle, Erik and Baby Dylan
Mellissa and I were trying to get him to smile, but he was very intent on just staring at the camera!! He is my little bobble head, but getting stronger everyday!!
God has done some awesome things this week and I want to share a couple of them with you! I mentioned before that I was praying for a friend to have down in Tucson because I would be alone a lot during the week because Erik has to stay home for work. Well, God has provided a friend!! A sister, actually!! Erik's sister Karyna is going to selflessly give up her time to come and spend it with me and Dylan! I was sooooooo surprised and I cannot wait to build our friendship and have a companion while we are away!! That is PRAISE #1. Praise #2 is that God has provided another 3 months of leave from work for me! At first I was told that I would only get approved for 1 month at a time. My first month was coming to an end and we were all anxious to see what the verdict was for the second month, and we were approved for an additional 3 months!! Such an answer to prayer and one less thing to worry about :) As an employee I am eligible for 6 months of unpaid personal leave and so far I have taken 1 month. Please pray that I can get approved for the whole 6 months! That would give me time off until January, and then hopefully Dylan will be healthy enough for me to go back to work part time. God does amazing things when you give it all to Him and stop trying to take care of it on your own. Why do I even try sometimes? We are thankful that we are able to see God providing so tangibly and are looking forward to what the future holds. Thank you so much for all of your prayers and we will talk to you later!
Love,
Michelle, Erik and Baby Dylan
Mellissa and I were trying to get him to smile, but he was very intent on just staring at the camera!! He is my little bobble head, but getting stronger everyday!!
Monday, August 3, 2009
Last Day of Chemo tomorrow!! YAY!!!
Good evening!! Tomorrow is Dylan's last scheduled day of chemo before we head to Tucson for the transplant process! The chemo drug that he will have tomorrow is a strong medicine. First he will have another spinal tap at 1pm where they will inject the medicine into his spine, and then at about 6pm, he will be on an IV of the chemo for 24 hours. While he is getting the IV chemo, he will also be getting high doses of another medicine that coats the inside of his kidneys to ensure that they do not get damaged from the chemo. He will also be getting high amounts of fluids to ensure that he pees out the chemo. We do not want it to stay in his body for a long period of time, or he can get bad side effects. Last time he received this particular chemo drug, he did not get the "typical" side effects that commonly happen. PRAISE GOD!! We are so thankful that God has protected his body. Please pray for him that he continues to be side-effect-free and that he has lots and lots of wet diapers!! This is probably the only time I get excited to change diapers and wait for them to get soaked!! We are also very careful when he has this much fluids because he tends to leak on anyone holding him! HA! He has gotten both grandmas, daddy, and auntie Karyna!! He has yet to pee on me :) I think he just loves me the most! Hee hee!!
We are so thankful for the past week of smiles and fun!! The next few days are not going to be so much fun, be we always get a lot of cuddle time :) We are praying for a quick recovery so that we can maybe get some time at home before heading to Tucson. We should have some more details about the timing after wednesday. Keep on praying!! Love you all!!
In His Mighty Grip,
Michelle
We are so thankful for the past week of smiles and fun!! The next few days are not going to be so much fun, be we always get a lot of cuddle time :) We are praying for a quick recovery so that we can maybe get some time at home before heading to Tucson. We should have some more details about the timing after wednesday. Keep on praying!! Love you all!!
In His Mighty Grip,
Michelle
Sunday, August 2, 2009
Infection
Hello everyone!! Thank you for your continued prayers for our little guy!! It has been confirmed from two positive cultures that Dylan has a bacteria infection in his intestines. He has been on two types of antibiotics since Thursday night and now that the docs know what kind of infection it is, they have placed him on a more specific antibiotic. So far, Dylan seems to be reacting well to the medicine and has not had any more fevers. Please pray that the infection goes away quickly and that the antibiotic gets in there and does its job!!
Other than the infection, Dylan is doing really well!! He has been in great spirits and is back to flirting with the nurses and doctors. He is gaining weight really well, which is a HUGE praise!! He is weighing in now at 11 pounds 8 ounces!! He is definitely getting chubby and we are so proud of him and how well he is eating! He decided to spice things up early this morning (around 4:30) when he pulled out his feeding tube! Silly Dylan. Then he got mad at us (me and Dymphna, his nurse) because he was hungry. There was formula everywhere since he is on night feeds and the tube was just laying there dripping on everything. He was soaked so he got a nice 5am bath and endured the task of getting the tube back in. He is getting so strong and is starting to realize where his tubes are and how easy it is to yank it out--there is no fooling him :) His chemo has been pushed off until Tuesday to ensure that his kidneys are strong enough to take the next dose. The docs may have him take a test on Monday to test his kidneys, but it all depends on what his lab results say. That is about all for now. Thank you to all of you who follow this blog on a daily basis and pray for Dylan! You are much appreciated!! Hope you all had a great weekend!!
Love Michelle
Other than the infection, Dylan is doing really well!! He has been in great spirits and is back to flirting with the nurses and doctors. He is gaining weight really well, which is a HUGE praise!! He is weighing in now at 11 pounds 8 ounces!! He is definitely getting chubby and we are so proud of him and how well he is eating! He decided to spice things up early this morning (around 4:30) when he pulled out his feeding tube! Silly Dylan. Then he got mad at us (me and Dymphna, his nurse) because he was hungry. There was formula everywhere since he is on night feeds and the tube was just laying there dripping on everything. He was soaked so he got a nice 5am bath and endured the task of getting the tube back in. He is getting so strong and is starting to realize where his tubes are and how easy it is to yank it out--there is no fooling him :) His chemo has been pushed off until Tuesday to ensure that his kidneys are strong enough to take the next dose. The docs may have him take a test on Monday to test his kidneys, but it all depends on what his lab results say. That is about all for now. Thank you to all of you who follow this blog on a daily basis and pray for Dylan! You are much appreciated!! Hope you all had a great weekend!!
Love Michelle
Saturday, August 1, 2009
3 Month Old Pics
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