Update 1*8*08

Well, we had a nice Christmas at home with Lukas. His counts were on their way back up and he was feeling pretty nice. We got to go to my aunts house in Krum for my side of the families Christmas party on Sunday the 23rd. We took Christmas Eve off and stayed home. Lukas was really tired from the day before and was starting to get congested and a little warm. We did our small family party with Kurt's brother and sisters Christmas Eve. Lukas went to bed early with a little bit of a fever. He was exhausted and worn out. Theron, Coen and Emma made sure all of his toys got attention though! Christmas day we got up and met my mom, brothers and grandma for brunch at IHOP. Lukas had a huge appetite! I guess all that sleeping made him really hungry! Theron and Lukas had a nice visit but were starting to feel more crummy. Theron's asthma was really flaring up and Lukas was even more congested and coughing. When we got back home they were both running a small fever. The doctor on call (Dr. Beam) wasn't too worried about Lukas because his fever never got over 99, so we could give him some Robitussin to help the cough. By 8:30 Wednesday night Lukas' fever was staying right at 100 or a little above after taking Tylenol, Robitussin wasn't helping and he was miserable. Theron had a fever that wouldn't go away and his breathing treatments didn't seem to help much. We had a different doctor on call (Dr. Heym) that said we should take Lukas into the ER to run labs-just to make sure there wasn't anything wrong. Since both the boys were sick with the same symptoms, Kurt and I decided to take them both in. We got to the ER about 9:30pm (12/26/07). The nurses came in and did vitals. The ER doc decided to do chest XRays. They had to access Lukas to draw labs. They did the regular CBC (checks the counts) and also checked the blood to make sure there wasn't an infection in the port line. The Xrays both came back clear but Lukas was neutropenic so they admitted him and sent Theron home with a strong steriod to help his lungs. About 2:30 am we were taken up to room 3101 and there we stayed until Sunday! They had Lukas on antibiotics and checked his counts ever morning. By Sunday all his counts but the neutrophils were good so they discharge us. Dr. Grainger gave him a shot of GCSF (growth factor shot) to help boost his neutrophils. The shot seemed to help him out and by the time we went back into clinic Thursday (1/3/08) his neutrophils were at 730 (at 50 when we left). He was ready to start chemo again, but would have to wait until Friday the 4th to start. This round was with 2 different drugs and would take about 7-8 hours to administer and there wasn't enough time Thursday to start. Friday we got to clinic at 9am and got started about 10am. He had to have 2 hours of hydration before we started to make sure his body would flush the chemo properly. Once the hydration was finished we started the first drug (Cytoxan) which ran for an hour. The next drug (Etoposide or VP16) ran for 2 hours. We didn't have a room in clinic to do this so we had to be out in the general play room while his chemo ran. He played for a while and slept a little and then played some more and ate a little bit and then finally about 3:30 he was exhausted. I held him for about an hour and then my mom took over. At 5:15pm we were finally done in the clinic. We had to go back to the hospital on Saturday for the 2nd dose of the VP16. We had to wait for a bed to open up on our floor and about 4pm we were able to go in. It took another hour to get started and then 2 hours for the chemo to run. Fortunately we didn't have to do hydration! Sunday was better. They had a bed ready for us first thing so we got in and got done by 4pm. And that brings us up to date. Lukas is doing well so far. It took a couple of days the last 2 rounds for the effects to start, so until then we are enjoying Lukas' good mood.


http://www.cancer.org/docroot/lrn/lrn_0.asp

Lukas Update 12*22*07

Well, here it is, two days until Christmas!

It's been a fairly good week. Lukas started getting more uncomfortable and fussy earlier this week so we took him into the ER Tuesday night to have his counts checked and make sure he wasn't getting any infections. Everything was clear and he was starting to get anemic (sp?) but counts weren't low enough for a transfusion so we were sent off with a nice diagnosis of "irritability"!

We rescheduled his clinic for 10:45 Thursday morning figuring he would be ready for a transfusion by that time and sure enough, he was. After about an hour into the transfusion he started feeling a LOT better and just wanted to play! I think Will liked it because all the nurses came over and were fawning over him and how cute he was (Lukas, not Will-sorry Will, you are cute too...) but they pulled out the excersaucer play station for him and he was in heaven! He found a fun new game to play with Uncle Will.... spinning in circles in one direction and getting his line as kinked as he could so Will would have to spin him back the other direction to unkink it. He loved it! The transfusion took about 4 hours and with all the waiting that comes with these visits, we didn't get out of there until 5:15 that night. I wasn't too upset though. The blood made such a big difference in how Lukas felt. (Red blood cells for those of you wondering what exactly he got)

He's just been playing and having a good time since then. Once everyone got home from work and school yesterday, we got to take Theron out and get our Christmas shopping done. It was nice to get Theron out of the house again with Mommy and Daddy for his own special time. Theron is getting a new molar in too! A "colar" as he calls it.

As we get into the Christmas holiday, I hope that each and everyone of you that has helped us out, prayed for our family or just thought about us is blessed a million fold for your kindness, generosity and love. I know I say this all the time, but I really am speechless. I don't know what else to say, other than thank you for all that you have done. I really can't imagine going through this without your help and prayers. We are so very fortunate to have such loving, giving family and friends, and even strangers! We are blessed more than I could have ever imagined.

I know that Heavenly Father knows each of you and knows all the good works and deeds that you do for others and it's my prayer that you are rewarded with all the blessing you stand in need of and have the most wonderful Christmas holiday. We love you all so very much!

Kurt, Heather, Theron and Lukas
MacDonnell Crew

2nd Round...

Well, Lukas had his second round of chemo last Thursday (12/13/07). He had 3 different drugs this time, but only had 2.5 hours of them instead of 72 hours so that was VERY nice!!! We just had a short stay at the hospital (we got home at 145am Friday morning-really short stay..) and then got to go home right away. As long as he does fine this round, we are expecting to be able to do chemo in the clinic from here on out. We will now be doing clinics once a week instead of 2 times, so our next visit is this Thursday at 1:45pm. We go up to have blood drawn to check his counts, they should be quite low which is to be expected, a quick physical and then a blood transfusion if needed. This will only be our 2nd clinical so I'm not sure how it will all work or how long we'll be there. Our first clinical was just labs and physical to get us admitted for his chemo. We also met with the opthamologist Thursday. He dilated Lukas' eyes and didn't find any damage or anything different from his visits in the hospital which is good. He can't really say if this will be a permanent thing or will go away as the tumor shrinks because he just doesn't know.

We got to be home for Lukas' 1st birthday. We ate at Spring Creek in Mansfield and had a nice little get together. Chelsea put some pics up on the blog. Then we went back to Debbie's house so Santa could make a surprise visit to the kids since Luke can't really get out to see him. It was great! Those pics are up too, by the way.

His hair is now thinning out and he has some bald spots now, his eye lashes have started thinning out too. He hasn't lost weight that we know of and he seems to have his appetite still. He is hitting what the docs call his "nater" now. It starts about 7 days after his chemo, that's when his counts drop to about nothing. The time frame is Chemo-7 days later counts drop-2 weeks later counts back to normal and next round of Chemo. He has thrown up a couple of times but we have his Zofran to help with the nausea. He is loosing his energy and is getting more fussy now too, but he does still play as much as he can.

Our next round of chemo should start January 4th so that's our update for now!

MacDonnell Crew
www.lukasmac.blogspot.com
www.caringbridge.org/visit/lukasmacdonnell

Night Out!

Last night Kurt, Heather, Lukas, Beau, Marlee, Paul, Doug and I all went out to eat at Pei Wei! We love that place! Anyway, Lukas had the most fun with his food I think. He was just "shoveling" it in as fast as he could. It was so cute. Check out the one of his lap!!

Isn't he a doll!! I just love him!!

Bracelets Are Here!!

The bracelets are in...... So you should all be receiving them soon!! Thank you for your patients and if you would like to try to sell any additional ones to anyone, feel free. They said when I ordered them they would try to get us a discount on our next order if we needed to order more!! So all the money raise will go to Lukas and his family for expenses!! If you have a hard time seeing it, the Blue side says Lukas 11*19*07 and the gold side says This Sucks :( They are so cute, I love them!!!! Happy wearing and supporting Lukas!!!!

When What To My Wondering Eyes Did Appear...

SANTA!!! With no tiny reindeer!

Santa let the boys play with the bells.

Theron wouldn't get to close. He had his eye on him the whole time.

Lukas was so cute, he cant see so he actually sat on Santa's lap. After a few minutes he got fussy, but he did good.

So our mom (Debbie) arranged for Santa to come and visit the kids. They are all scared of him, so none of them would go very close to him. Oh well, Santa gave them all "Christmas Bears" and told them to sleep with it on Christmas Eve and it would help them sleep. It was a nice surprise! Its kinda sad this Christmas with Lukas being so sick, but the faith that we all have in our Heavenly Father and his Son Jesus Christ has helped us to stay positive and know that everything is going to work out okay!! I'm thankful for the gift that we were given to celebrate this Christmas Season. I'm thankful for each and every one of your prayers on behalf of Lukas and his family, and I know Kurt and Heather are too. Thank you Thank you!!

Lukas Turned One!!

Little Lukas turned One yesterday!!! He was so cute. He wasn't feeling very well some of the time, but he still tried to have fun. He got some fun toys and some clothes. Most everyone was there and we had a great time!! We ate at Spring Creek Barbecue, Yummy!!!! Then Lukas opened his presents and we had yummy cake!!! Fun times had by all!!!

Home at Last!

WE ARE HOME!!!!! Lukas got discharged from the hospital today around 3ish after he finished up his antibiotic today. It felt SOOO good to get out of there after 3 weeks!!! We now have another few changes to our game plan as well.

We are going to be eating dinner at 6:30pm on Tuesday at the Spring Creek in Mansfield (off 287) If you would like to come out and join us for Lukas' birthday dinner, we'd love to see you! We'll be there from 6:30 till 8pm. His counts are back to normal, but if you aren't felling completely well know we love you and we'll see you when you are feeling better. We'll still be around!

Chemo: We are now going to start his next round of chemo on his 21 day mark which will be this Thursday. We are going to go in for his optometrist appointment that morning and then be admitted to the hospital for the night. We are going to start his chemo Thursday and then stay through Friday to see how he reacts to this new dosage. If all goes well, we will be able to go home Friday and then only have to go into the clinic for the rest of his rounds of chemo. We are hoping this is the case!

I guess we shaved his hair for nothing! It hasn't started falling out. His eyelashes are starting to fall out though which has been really bothering him. He has been rubbing them so much that he has bruised his left eye. The doctors took him off his fluids last night and didn't give him any nutrition so when he woke up this morning he was hungry! He ate a ton of Cheerios and Teddy Grams. He is drinking a little, but we'll work on that. He hasn't had to have too many doses of pain meds either which is good to see. So all in all, I think he's been doing really well. Much better than Kurt or I expected.

We appreciate all of your prayers and gifts and support. It has made a world of difference for us and I'm sure it will continue to be a great help. We really know how much we are loved and cared for and are so grateful for that!

Love, us
MacDonnell Crew

Lukas Update 12*7*07

It's been a really good last couple of days! Lukas has been feeling up to playing and laughing! He hasn't had any morphine since Wednesday morning and has only had a half a dose of Tylenol/Codine (because he spit most of it out!) this morning. He just had some regular Tylenol and that seems to be doing the job.

Lukas has been on nutrition (through his IV) the last couple of nights since he hasn't really been eating. Dr. Eames is hoping that once he is off fluids and nutrition he'll have more of an appetite since he won't feel full all the time. I hope so too. It's hard seeing him not eat or drink much.

So here is the latest news..... We are going to do 8 rounds of chemo (so 7 left to go). Our doctors feel very uncomfortable going into resect the tumor in Lukas head because of where it's located so they are hoping to shrink it away or at least enough that it's a LOT easier to do surgery on. That's perfectly fine with us. The tumor is in the bone, has a lot of blood supply and is surrounded by soft tissue and the adenoids. I am not a doctor, but that sounds pretty dangerous to me!

Lukas counts are back up to normal so we are still on track for our next round of chemo to start on the 18th. Because we are doing a different set of drugs for this round, we are going to try and do it in clinic so we can go home after an 8 hour hospital day. I think we'll have two of these in a row and then just clinic visits until the 3rd round. The doctors want to make sure he is really hydrated so they'll be pushing fluids while he is doing chemo. As long as he reacts fine, then we won't have to stay overnight.

The docs are all hoping that once the tumor shrinks he will get his vision back. The neurologist and opthamologist both say that things look good from their prospective so they are thinking it is just the tumor that is causing problems. Dr. Eams hasn't had any of her patients have this kind of problem, so she said we'll just wait and see how things happen and hope that it is the tumor causing problems as the other doctors think.

We'll have more CT's and MIBG's in between the chemo to see how the cancer is reacting to the treatment, but I don't know if those are scheduled yet.

I feel like I am forgetting something so if you have questions, just ask!
MacDonnell Crew

For Your Pleasure!

Lukas wasn't having a very good day today. He has been in a lot of pain the last couple of days. They were getting ready to send them home, but he just cant seem to make it without the morphine. The doctors were trying to wean him onto Tylenol-codine, but that doesn't seem to help him. Lukas has also gotten what they call Mucusitus. I'm not sure how to spell it. They say its common when you are on Chemo. He just has a lot of mucus coming out of his mouth, and they sometimes get little sores in there too. Lukas doesn't have any of those as of yet. So he is still trying to just push through it, but its hard on the little guy.

Today I was able to play with Lukas a little. He is so sweet. The poor baby cant see, and he doesn't feel good at all, yet he just wants to be normal. These were taken a little bit after the morphine kicked in, so he was able to play for a little while.

This picture, I was holding him and Kurt was playing with him and he was smiling. Its been so long since he has really smiled a lot, so it was so sweet and wonderful to see.

I always forget that you cant rotate a video, so sorry you will just have to tilt your head or something, but its worth watching. Its not so often that he is up and playing and talking so you just have to take what you can get. He was so cute, I was having so much fun playing with him. Hes a doll!!!!!!!