Delaney just finished her very first chemo (see action shot below) and literally two minutes later she was riding her IV down the hall yelling, “YEEHAWWW, Ride’em cowboy!!!”
Blessed. There is no other word for it. We are definitely blessed and just the showing of love and support we are receiving is enough to bring tears to our eyes. Yes Delaney is sick, but with soooo much bad, let me share some good:
– Our employers and co-workers have both been amazing!
-no fewer than 5 people offered to get on a plane to come out here immediately.
-Stacey’s mom and her husband were out here (Denver) from California within hours of us getting the call.
-Stacey’s mom is able to stay at our house and help with our other kids for a month! Even this idiot can’t insert a mother-in-law joke here but I can point out that her husband is bald as a billiard!
-within 24 hours of getting the call, we had not one, but two pastors from our church visit us at the hospital just to pray with us and just be there for us.
-we have people praying for Delaney literally across the world. So many of them we will never meet but we really appreciate. Heck, this even has some of our heathen friends praying for Delaney 🙂
-Our friends went into action immediately! Dinners, cards, gifts, you name it, and they have provided. They have done more than provide, they have organized and coordinated and just said, “you guys be there got Delaney, we’ll handle this.”
– the kind words if encouragement from friends (and even strangers) from all over the globe.
-the girls schools and people we may not even know at them but they love our little D have just sprung into action with support.
-the level of care Delaney is receiving at Children’s Hospital in Aurora. Right after the first doctor told us that she had leukemia left, my wife’s mind started racing: “how do we even know this place is any good, what is there level of success with chemo, is this the right place for her to be at?” Right away we found out that they are among the top 10 in the nation. Even beyond rankings, the doctors, nurses, and staff have all been incredible and just so loving with Delaney (and us).
-the type of cancer she has. Days are kind of blending together but I think yesterday (maybe two days ago) we were waiting to hear which kind of cancer she has. One would that she come back to the hospital and be admitted each time for the chemo, and the other would allow for future chemo treatments (after this initial week in the hospital) to be outpatient. She got the “good” kind.
I know Thank You cannot cover our gratitude for all the above (and SOOO much more) but I just want to let everyone know how much my family and I appreciate everything.
Delaney’s stuff yesterday seemed to go well enough. Her port kinda gives her the cool ironman look. Best of all, she even got to see two of her sisters yesterday! She just woke up, so I’ll leave you with this pic of some awesome sister love.
I don’t pretend to be an expert on leukemia, but as I learn, I may as well educate you all as well. I’ve got to make it quick because today’s fun starts in about 10 minutes. Today they are putting a port into her chest. It basically makes them giving her medicine easier in the future. Instead of finding new holes to poke her in, they just access the port. It will be under her skin and is sturdy. They will also be doing a lumbar puncture. Yesterday’s bone marrow test showed that the cancer is already in her bone marrow at 90%. Today’s test will tell us if it is in her spinal fluids. It will be about a 2 hour procedure and she will be sedated the entire time.
She is doing awesome. She already spanked me in War, took Grammy’s connect the dots away because she wasn’t doing it right, and supposedly beat me in a coloring contest (official results are pending while I am appealing the judges that are being biased about how cute the little toothless contestant).
Let me brag about my beautiful wife for a second. You know that port that Delaney is about to get in her. Stacey did her Master’s Thesis on it (technically made a full educational thing on it to teach families about it, proper care, etc.). Stud. Of course, Stacey is first and foremost a Mom. She can probably recite all this medical jargon in her sleep, but it is different when it is your own kid. I mention proper care because it is a “foreign body” in our body and can also be the port for infection which we can’t have.
By the way, my lack of knowledge is obvious (I am basically clueless in all of life but what are you going to do) but I’ll share a good tip that the doctor told us: Stay off wikipedia. If you want info (that is actually accurate) they referenced Children’s Oncology Group– Acute Lymphoblastic Leukemia. By now you are probably seeing 50 typos with each post but I haven’t had time to edit, etc. In other words, I am just trying to share even if this is far from perfect.
Thank you for your prayers and I’ll try to shoot out another update tonight. Speaking of tonight, Delaney’s sisters (the ones that aren’t in college) are going to come check out the hospital. They were told last night so know what is going on and are excited to come (hopefully) get to see their little sister. For those of you that don’t know Delaney personally, this will give you a little taste of her very funny personality: I told my oldest the first night. As she tried to hold back tears and be positive with her baby sister, little Delaney heckled her with, “Boooorrrrrinnnngggg!” Our little Tomboy is already tired of the pink. “Oh your a girl, you must want a pink bandage, pink this or pink that.” She finally got some of her Tomboy boost last night when some good friends brought her a blanket. What was the design? None other than Darth Vader. Oh yeah, that’s what she is talking about!!!!
Good morning. I am going to try to catch from where I left off but first I’ll digress to share that I am an awful parent and that beautiful picture of Delaney I posted confirms that. She no longer looks like that. No, she isn’t losing her hair yet (apparently that will be within the next couple of weeks), but she no longer has all those teeth in that picture. In fact we woke up in our own beds in what was our normal lives on Monday morning and were just talking in bed before Delaney burst into our room in tears. “Did you not lock up Charlie last night?” she cried. What? Why? “Charlie is in his crate baby, what’s going on why are you so upset?” “The last time the tooth fairy didn’t come it was because we forgot to lock up Charlie and she didn’t come last night!” The last time? Ouch? Worst. Dad. EVER. Apparently the tooth fairy was just a little delayed this time because of the blizzard we had Sunday. Phew!
Anyway, I’m not sure where we left off last night on this crazy (Non) Adventure so I’ll just pick up from somewhere. Monday night (still at the ER), they wanted to take more blood. Yes, they had already seen the other lab results but their pathologist was going to need their own sample. By the way there are a few things that are going to get me through this: My faith in Jesus Christ,my wonderful support system of family and friends (including you), and my humor. Some or all of these may offend you, but please understand that if a joke seems to offend you (how could he even be joking at a time like this???)right now I am trying to do whatever it takes to get through this. I, only mention this because when the first doc in at the ER, he looked exactly like that actor from Juno. My wife and I looked at each other like, “If freaking Ashton Kutcher is punking us right now, I am going to punch him right in the nose!” What I wouldn’t give right now to learn that we were just being punked and this was all a stupid joke.
Besides Juno, a very nice young woman came in from a group that I always forget (Child life?) but I will get the correct answer because for everything they do, they at least deserve proper recognition. Anyway, she showed Delaney on a stuffed Teddy Bear where they were going to poke her and prod her. Then the docs came in and did just what she said. Then… we waited. Apparently, that is something we are going to have to get used to.
Eventually another doctor came in. She wasn’t from the E.R. but was a Hematologist-Oncologist doctor from the 7th floor. She said that she had a chance to look at the lab results as well and that she couldn’t confirm it 100% until the Chief Pathologist came in, but she was almost sure that it was leukemia. On a completely unrelated note: as I write this little Delaney is giggling up a storm because she just tooted.
Back to the doctor. She was very nice and spent a lot of time with us but the thing that immediately stuck out was her her choice of words, “WHEN we start chemo…” Just like that we went from IF to a WHEN. That when by the way, at least at that time, was going to be the next day. She spoke with us for about 45 minutes and told us they were going to be moving us to the 7th floor and kind of the game plan from there. We knew from when we got THE CALL earlier that day we would be there overnight, but we just found out that we would be at the hospital for a week.
Delaney’s new room is great. It has a spectacular view of the Colorado Rockies and two extra make-shift beds for us to stay in which we are only able to due thanks go Grammy and Grandpa Tim getting on a flight and immediately coming out. They are watching our other kids and getting them to school, etc. which allows us to be with Delaney full-time right now. Much Appreciated!
Anyway, before this post becomes War and Peace, I feel like I should move it along lil’ Doggy. Yesterday they took her in and pulled out some bone marrow. They confirmed that it is Acute Lymphoblastic Leukemia (A.L.L). Today they are going to put a port in her chest and do a lumbar puncture. With the lumbar puncture they take out some spinal fluids and replace it with what will be her very first dose of chemo. Then she starts her “Induction Phase” tomorrow. I’m getting long winded, but I finally got us to today! Yayyy.
Delaney is up and doing great. She is being her silly goofball self. Grammy and Grandpa are going to bring her sisters by today after school. They can’t come up to her room but we might be able to take Delaney down to see them if she is feeling up to it. We appreciate your continued prayers and support. Today’s procedure will take about 2 hours and is scheduled to start at 1pm (MST).
Oh, real quick, before I wrap this up, a quick shout out to the Denver Rocky Mountain Chapter of Harley Riders (again, probably not exactly correct). Once a month they buy this floor pizza. So last night we ate pizza, girl scout cookies, and Delaney even got her first “Doo-Rag” all complements of the local HOGS!
I am realizing these may be fragmented going forward. Please understand that I’ll give updates as we have them. They may stop suddenly if a doctor comes in or something, or like right now when I’ve got to go jump in on the tickle fight!
Hello and thanks for dropping by. Some of you know a little already and some of you already know a lot. Well scratch that, we don’t even know a lot yet but anyway I figure if I start at the beginning, we can all be at the same page. My name is Tom, my wife is Stacey, and our daughter is Delaney. Delaney has 3 sisters and is quite possibly THE sweetest person in the entire universe. And according to people a lot smarter than me, Delaney also has leukemia.
Last Thursday Delaney mentioned that her ear was hurting. I figured that it was probably an ear infection so I better make her an appointment to see the doctor. However, Delaney being the avid reader that she is, did not want to miss her special day of kindergarten where she got to read to the class so I held off on making the appointment that morning. By that afternoon, she was in tears because her ear hurt so bad so I made her an appointment for the next morning. She took some medicine for the pain and eventually drifted off to sleep.
At about 9:30, she woke up crying and my wife went into console her. She carried her into our bedroom and said, “look at her face.” Extending to her cheeks about an inch from the bottom of her ear was really swollen. Long story short (okay shorter anyway), Stacey called the advice line and was told that she should take our daughter into the Emergency Room right away so she did.
So even though my wife just worked a 12 hour shift at her own nursing job, and that she was going to get things ready for another daughter’s birthday the following day, she put on her Mom cape and headed to the E.R. Delaney, really just wanted for cuddle with her Mommy and Daddy and for the pain to go away, but she did not want to go to doctor’s office at that time of night. “Come on” my wife told her, “it’ll be an adventure.”
At the ER, they took some labs, looked at the swelling on her face which they thought was an infected parietal gland and then analyzed the results of the lab-work they just took. Whatever they saw sufficiently spooked them to the point where they said, “Uhhh… we need her moved to a different ER!” They notified my wife that Delaney had to be transported via ambulance to Children’s Hospital in Aurora, CO. Delaney said, “Ambulance???” Stacey said, “It’ll be an adventure.” Her adventure ended the next morning after she threw up some sort of disgusting medicine. The doctors at Children’s said that it was probably an infected lymph node, prescribed some antibiotics, and sent us on our merry way.
What will sure to be a recurring theme here, and also happens to be a real blessing, is that my wife is a darn good nurse. She actually was an oncology (cancer) nurse for over ten years before moving on to hospice. She knows her stuff. So when the doctor said we were free to go, Stacey started politely pressing about the “no restriction” part of the release (Delaney was busy doing a silly dance while singing, “Free at Last, free at last, thank God Almighty, I’m free at last.”). Apparently, Stacey knew that at her place, a patient with that low of a white blood cell count would have some restrictions. ” But”, the doctor pointed out while politely semi-brushing her off, “you work with old folks who are already sick, and Delaney is young and healthy.”
My wife being the natural Florence Nightingale she is, imposed her own restrictions. I took Delaney’s sisters to the Wildlife Museum and then on a real treasure hunt (Geo-caching– go on… call me a nerd and get it over with). Delaney did not participate in the day’s fun so she could take it easy. On Sunday Delaney was feeling so good she kicked my butt all the way through an Insanity workout, “Come on Dad, lift your knees higher, Dig Deeper!!!” She didn’t only pull drill sergeant rank on me, she did the entire workout with me. I point that out to because to illustrate the energy levels she had and still has as of right now. She doesn’t feel sick… she just wants to go home and get back to school.
Monday (yesterday) was a day just chalk full of adventures, including some that we’ll never forget. Stacey took Delaney to what we thought was a routine follow-up appointment in the morning. She was then notified that the first doctor from Friday night called over to say, “hey, get this kid’s blood drawn right away because we are hoping what we think we saw, was a mistake.” So they took more blood from Delaney and then Stacey was able to take her home while we waited to hear something. The first something was a call stating we needed to get Delaney to an Ear, Nose, and Throat doctor to check out her lymph node/ parietal gland. So we trekked across town to be told by a very nice E.N.T. doc, “I really don’t know what this swelling is, but it doesn’t really matter because it isn’t even related to the irregular lab, and that may be your real problem.”
A few hours later we got the call that immediately put our priorities in proper perspective: “You need to call on any and all support systems you have because we believe Delaney probably has leukemia and you need to get her back to the ER right away where she will be admitted.” You could have taken a large hammer to our skulls and it probably would have been less of a blow to us at that point. Our 12 year old saw us and immediately knew something was wrong. We had her pack a bag, quickly packed our own bags, and headed back to Children’s Hospital. Delaney knew something was up and after already having been seen by two different doctors that day, did NOT want to go on one more adventure.
At this point I am just going to admit to barely being able to keep my eyes open. I am sure there are typos, misspelled words, better designs, etc., that I can improve on at some point when I am more awake. I’ll update this to keep everyone posted. IF YOU WANT TO RECEIVE THESE UPDATES: There should be some sort of area that allows you to “follow” by entering your email address in that area. If you choose to do that, when there is an update posted, it will be emailed to you right away. THANK YOU FOR YOUR PRAYERS FOR DELANEY!!!!!