Seattle’s One Big Kiss!!

I know I haven’t posted in forever (and trust me, I have a whole ton of things to blog about! That’s the problem, we’ve been too busy doing fun things to actually post about them. 🙂 )

But, tomorrow and Wednesday are big days! Some of you may remember in 2011 when Madeleine and I went to the hospital for KISS 106.1’s One Big Kiss. Well, in 2012 we couldn’t go, but I did listen and donate, as usual.

This year, the One Big Kiss event is starting tomorrow, 2/26 and continuing on Wednesday 2/27. You can read more about it and find out how to donate to the hosptial here.

Unfortunately, I’ll be in meetings most of tomorrow, so cannot listen like I would like to. Please, if you can, donate to a wonderful cause. Children’s treats so many kids whose families could otherwise not afford this type of world-class healthcare. We will forever be in debt to them for the fantastic work they did for Madeleine from diagnosis, to treatment to physical therapy, surgeries and beyond.

June MRI Visit

A couple of weeks ago Madeleine had another MRI follow-up. I’ve been bad about updating the blog for each one, but a brief summary would be to say that heading into this MRI, we have not heard “the tumor is stable” since prior to her surgery, last year. I believe that MRI happened late August, early Sept. Because of that surgery, we have not moved to the next tier of maintenance MRIs yet. That would be a 6 month spread between MRIs instead of a 3 month spread.

One issue we’d been having was an issue of distrust. Madeleine remembered the pain after her surgery and was petrified when we would go back to the doctor afterwards. She has slowly gotten over that, thanks in large part to an amazing nurse who was really really wonderful with her several MRIs ago. That particular nurse showed her a mini-mask for her animal and let her decorate both her own mask as well as the “balloon” with stickers. They played a little game putting the masks over each other’s faces and it really made Madeleine a lot more comfortable. Prior to this nurse, Madeleine had recognized the MRI room and hid behind the bed screaming and refusing to come out. 😦

Her special mask

This time I was a bit apprehensive to see how she’d handle the MRI, but she did great! We got to the hospital on time. Alex was not with us, because he had to work. We proceeded to check in and were taken back to the initial exam room when our turn came. Madeleine was super calm and relaxed and didn’t seem to have any issue with being there. When the nurse came in, I asked if he had a little mask for Madeleine’s puppy. He brought one for her and also let her decorate her mask with stickers. 🙂 This time she even picked out the yummy smell to put on the inside of the mask! That’s the first time she has shown a preference on that.

They took us back pretty quickly and Madeleine sat in my lap while they administered the initial anesthesia mask. She noticed the “balloon” that was growing and shrinking and she took breaths and said “mama! I blow up a balloon! Look mama!” 😀 I’m so happy that she remembers how wonderful that nurse was and it made such a big impact on her to where she is not scared anymore.

The rest of the MRI went as usual. Came back sleepy, eventually woke up. Ate crackers, juice and when we were done with that, we headed to the cafeteria and had some lunch.

Full mouth for her, but the only decent pic I got of her with me. LOL

Once lunch was done, we had some time to kill. I went to drop some stuff at the car that we no longer needed and found her a car stroller on the way! She was thrilled.

Smile!!!

Then we stopped by and saw the hermit crab. She adores hermit crabs!

Checkin’ him out

After a quick stroll through the hospital, we went up for her hem-onc appointment.

Super hungry after having to fast in the morning – she had more crackers!

The results? STABLE TUMOR!!!

I am so beyond thrilled! It was such a relief walking out of that appointment with positive, definitive news for the first time in a year. We have one more MRI before we reach one year post-op. At that point, if the tumor is still stable, we can move to the 6 month MRIs.

Madeleine’s last Physical Therapy appointment resulted in her not needing to go back for another year. Her oncologist doesn’t see a benefit to her seeing Neurology any longer, given that she’s recovered nearly all of her strength. So the ongoing, regular doctor’s visits should be diminishing significantly!! Woohoooooo!!! All in all, very good news this visit. 🙂

Home again, home again

😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀 😀

Yes, that’s right. We’re HOME!! We’ll need a couple of days to get back to our routine and catch up around the house. I’ll be working from home, as well. So, for now we ask that we not have visitors for those reasons. But it feels soooo good to be home!

Madeleine is a little bit wobbly on her feet, so we have to watch her very closely to make sure she’s not trying to get off the couch and run around – as she has already tipped over once. 😦 It’s hard to keep this girl down, though. I see a lot of stroller walks in her future. She loved the stroller in the hospital.

But for now, at least we’re home. She’s eating some goldfish crackers and hanging out before dinner and her next pain med dose and bed time.

Thanks all for your concern and well wishes. She did fabulously!

10-9-2011 Update

SMILE!

That’s right, it’s good news today! She is doing fantastic and has had all of her IVs removed. 😀 Alex stayed with her last night and said she slept ok, so that is great as well. Her nurse said she’s been doing amazingly with only Tylenol and hasn’t had a dose of Oxycodone since 4am. Wo0t!

The doctors did rounds at about 11am. I overslept at home, so I’m glad they didn’t do them super early like they normally do. A few things:

1. She should be able to bathe in the tub after Wednesday. That’s exciting. 🙂 She loves baths.
2. In a couple of days she can take off the dressing that’s over her chest tube wound. Although, I will just leave it on until it starts coming off. I don’t see a need to take it off unnecessarily.
3. She will be switching from Tylenol and Ibuprofen to the Oxycodone because they want to ensure she doesn’t develop any infection related fevers. You might remember this same thing while she was on chemo. But they are reducing the dosage since she clearly doesn’t need much if only Tylenol was doing the job.
4.  We’re still on gen. surgery’s service so we have not seen anybody from hem-onc. I asked them if they could please check in with them to find out what our process is going to be for follow-ups and if someone could please come talk to us because I have questions. I should have some sort of answer about that by the end of today, or when we check out. If not, I’ll keep asking, I guess. Still annoyed by that. I do not understand why two services can’t come talk to us. I consider hem-onc kind of our “home base” of providers here and would appreciate  at least a check in.
5. And most exciting of all – if she is eating more normally by this afternoon, they said that we can explore discharge this afternoon/tonight. WOOHOOOO!!! And that is the reason for the smiling picture, above. Even Madeleine has expressed that she would like to go home.

Some language developments in the last couple of days: She is using full sentences or nearly full sentences instead of just 2 and sometimes 3 word phrases. 😀 She says things like “daddy eating food!” “daddy doing now?” (what’s daddy doing now?) and “Book, read it peeease!” Occasionally “book! Read it NOW!” which makes mommy upset. I don’t take demands from 2 year olds and this results in her saying “I sowwy, mommy. Hug! Hug!” 😀 Then we move on to: “I see nose! I see eyes! I see teeef” “Milk, peeease!” “Watch Micky Mouse!” “My oranges!” “My crackers!” Most of the nurses and doctors have commented on how impressive her language skills are for her age. 🙂

My guess is that since she can’t run around here like she does at home, she is picking up a lot more language since that’s all I can really do with her. Read books, practice words and letters and numbers and watch movies.

She has had a bit more to eat since the doctors said she needed to eat  to go home. About half a little thing of cheerios. A bite of cheeseburger and a couple of fries. A little bit of cookie. She’s still drinking milk well, though. We’ll keep working on the food! But for now, she’s taking a nap. 🙂 She rocked to sleep on me, so I used it as an opportunity to help de-tangle some of her gnarly tangles on the back of her head from sleeping on her back so much.  When I finished, I laid her down she stayed asleep, even. Good girl! So, for now she looks like the picture below. So sweet.

Post-Op days Wednesday – Saturday

** Super long update ** Sorry for the lack of updates. You’ll understand why after reading this post.

First, we didn’t get surgery finally scheduled until last week, I believe. So I didn’t really have anything to even update. Second, work has been crazy. I’m exhausted. Hopefully things are calming down on that front, though.

With her Minnie in front of her favorite fish tank at check in

Wednesday we arrived bright and early to check in for surgery. She was the first case of the day, which is great. It means she didn’t have to wait around uncomfortable and hungry for long. She went back relatively quickly and it was Alex’s turn to go back to the OR with her for the face mask of sleepy medicine. Is it pathetic that we are to a point where it’s “whose turn is it this time?” Oye! He said she didn’t fight it at all this time, which is amazing! There’s almost always some form of protest. Then we played the waiting game. Surgery (including anesthesia and prep and spinal monitoring set-up) all took from about 9am to 3:40-ish? Alex and I both brought our work laptops and worked from the cafeteria. Once our pager beeped, we packed up and got to speak to her surgeon. This is what he said:

Reading while we waited for surgery

The surgery went really well. He felt as though he got out everything he had intended to get. There is still a bit near her spine that he didn’t touch and a bit pushing into the muscles between her ribs that he didn’t touch. He didn’t see the need to risk damaging those areas. He did have to go slower than anticipated due to the adhesions to the lung and scar tissue from her previous re-section surgery. She didn’t need a transfusion, though. Vitals were good and he said she did great. Woohoo!

With mommy. Excuse the lack of make-up/hair. I haven't bothered since Wednesday.

After surgery, she was taken to recovery for a bit. We were paged again and I was brought back to her, because she was getting so upset they felt it’d be best to have me back there to keep her calm.  She needed another type of pain medication to help, because the Morphine alone wasn’t working.  She was then admitted to the ICU. We had brought up pain management prior to surgery as a huge concern since last time  she had such a rough go of it post-op.

Right after recovery. Poor baby was so knocked out, but in pain, too.

She kept asking for daddy hugs and kisses. The sweetest and most heartbreaking little voice "daddy" "uggg uggg uggg" 😦

A special pain medicine doctor was assigned to her this time.  The additional medication (Ketamine) they decided to put her on required  for us to be in the ICU since the nurses on the regular floor don’t feel comfortable dealing with it…She has had her own dedicated pain management doctor since being admitted, and even with that – we had a little (or actually it was pretty big…) snafu.

Getting some sleep...sort of.

Wednesday evening, after settling it, it still seemed as though she was in pain. She was grunting, breathing weird and would wake pretty frequently. She wasn’t getting good sleep and I was starting to get frustrated since we mentioned this issue so. many. times. before surgery. The night nurse kept giving her extra little boosts of Morphine, which weren’t working all that great. So, around 7am on Thursday, another doctor came in and said they would page the pain management doctor. Good. Only one parent is allowed to stay overnight in the ICU due to limited space, so 0nce Alex came back Thursday morning, I went to get breakfast thinking pain management would be in by the time I got back. They didn’t come while I was gone. Strange. She’s still grunting and grimacing and hadn’t slept restfully (more than 5 minutes at a time) since 4am. I was getting frustrated, but was trying to not be a huge…um…brat? Alex was definitely getting frustrated, too.

See the grimace? 😦

The pain management was brought up at rounds and they said they were waiting on a call back from the pain team. So by 11:30 I’d had it. It had been 4.5 hours at that point which I felt was just totally unreasonable. I asked our nurse to please ask again, and the doctor said she’d page them again. By noon they STILLwere not there so I asked our nurse to try again.She asked me to explain my concern and why I thought Madeleine was still in pain and kept reiterating “but you feel as though it’s mostly controlled, right? She just isn’t able to sleep and you want her to sleep?” Come on! This is my daughter. I know how happy and talkative and chipper she normally is and she isn’t even smiling. She got on the phone with the ICU doctor. At which time I heard the nurse talking to the doctor saying that she would call to find out what was going on, but that she’s been hung up on by the pain doctors before and thought it’d be more effective if the ICU doctor called. What is going on?!!? That is ridiculous that they are hanging up on nurses. By noon, the doctor arrived. The not good news about that? She had not even received a page, she was just dropping in to check on Madeleine to make sure she was doing ok. Alex about lost it at that point and wrote an extremely angry e-feedback on the hospital’s website.  The good news about the doctor dropping in was that we were able to increase her medications and she was comfortable and slept for a little bit. She seemed uncomfortable again later in the day, so they also changed her from Morphine to Hydromorphone. Similar, but it seemed to have a much more positive effect on her pain levels.

We tried to distract her from the pain by reading to her, but she still had the sad face on.

They finally got her comfortable and she fell asleep.

She has been so sweet since her surgery. Wednesday she received a present from her daycare. A very sweet little pink bear and some balloons. You never know what a kid is going to love, but she adores this pink bear! She kept saying “snuggle! Bear!” and pulling it in to her chest. Here at the hospital, whenever they do something unpleasant they give her a sticker afterwards. So, at one point she asked for a sticker and I gave her one of the ones she’d accumulated since surgery. She wanted the paper backing taken off, so I did that for her and then she stuck it on her bear’s face and said “all betta nowwww!” 😀 Apparently her little bear was hurt. LOL! She has been snuggling with her bear, Mickey, Minnie, Sophie (the giraffe) and a puppy dog that my employer sent to the hospital for her. She pulls all of them in to her chest and rubs her face into them as she’s getting sleepy.

She is also in love with the clocks here. Non-digital – so she sees all of the numbers and points to them “I see clock!” “I see numbers!” to which I say “which numbers do you see, Madeleine?” And she says “I see free! I see four! I see seben (7)! I see teh-n!” Or whatever combination she decides on that particular time.

What I arrived to on Friday morning. So sweet! And daddy was thrilled to get his arms around her for some real snuggles.

She is very very big on hugs and kisses this hospital stay and wants lots of cuddles. She also wants to watch Mickey. All the time. To the point that Alex went out and bought her a Mickey Mouse Clubhouse DVD this morning so she wouldn’t be so upset.

Then it was time for some scrambled eggs, biscuit and mandarin oranges. She ate a little bit of the eggs/biscuit and all of the oranges.

Don't forget the juice!!

The remainder of Thursday and Friday morning were just monitoring her and seeing if she could come down on the Ketamine.  At some point her catheter came out – I can’t remember when exactly – but she is making great diapers without it. 🙂 It was Alex’s turn to stay the night Thursday night, so I went home to sleep. By the time I came back Friday morning, they had dropped her Ketamine in stages and she’d done great. By noon they had stopped the drip and were just monitoring her to see if she did ok. She did! At this point, they switched her to Torodol (sp?) a super strength Ibuprofen to replace the Ketamine, which is something the nurses on the general floor are comfortable with giving.

On the gen. surgery floor - Oh the drama!!! LOL! She had definitely started getting her spunk back.

Dr. Healy, Madeleine’s surgeon, also came by our room to check on her. He saw that she was much more comfortable and gave us some pretty amazing news. The tumor that was removed was about 5cm in size and pathology showed that it was benign! There was no mention of active Neuroblastoma cells in the report (from what I could decipher of the medical-speak in the report). This is so amazing! I am still waiting to hear anything from Hem-Onc about this, as I called yesterday and have not received a call back from anyone about next steps, follow-ups, etc. And we’re on General Surgery’s service, so the oncologists aren’t doing rounds on Madeleine. Frustrating – as I would like to ask some questions. This is really the first time I’ve been frustrated with communication from Hem-Onc. Don’t know if it’s because she’s not in active treatment anymore so they just don’t have time for us. Don’t know if maybe I’m just unreasonable.

Alex wanted Burger Master for dinner, so I went out and got it. Once Madeleine saw that there were fries in the room - she was all in! She started shoveling them down. Ohmygoodness! Otherwise, she's been eating minimally, still.

The other notable thing that happened on Friday morning was that the Director of Pain Medicine stopped by our room. He asked for our take on the situation that’d happened the previous day and told us that he would definitely be getting to the bottom of it. He seemed more than a little bit irked at how things had been handled and agreed that 5+ hours for pain relief was absolutely ridiculous. He gave us his card and told us that if at any point we felt her pain was not being handled appropriately, to escalate and keep escalating until she was comfortable again. Good!! I was worried that I had had unrealistic expectations, but he confirmed that I had not…which irked me even more, because the nurse sort of reacted like I was being pushy because Madeleine wasn’t screaming in pain. But I know my daughter and her sad face and grimacing and inability to stay asleep for more than 5 minutes is not like her unless she’s in pain.

The bright side in all of this is that at least while she was taking Ketamine, her likelihood of remembering what happened is minimal. It has amnesia-like qualities. Fingers crossed that she doesn’t remember! Also a bright side is that we now know which medications do control her pain for any future procedures where pain medication is required. Again, fingers crossed that this is the last major surgery she’ll need related to all of this cancer stuff.

By 2:15 pm we were transferring to the general floor.  I asked for a single room – at which the ICU doctor responded by laughing at me, practically rolling her eyes and basically telling me “fat chance” (rude woman!!) –  but much to my surprise, we were escorted to a single room! Wahoo!! I’m glad I asked, despite the rude response. Madeleine has had a tough enough time sleeping – we didn’t need another family making noise and preventing her from getting the rest she desperately needs.

And if you all don’t mind, I’m going to jump on my soap box for a moment here. You can skip it if you don’t want to read ranting. ** soap box rant to follow **

I realize that doctors aren’t known for their kindness all of the time. Kindness isn’t what makes a great doctor, some might say. In fact, if I had to choose kindness over smarts, experience, medical skills and lack of errors I would obviously choose the latter, however I am quite disappointed with how rude some doctors can be. We have been very lucky with our nursing staff during this stay (aside from the one situation noted above). They have been much more experienced than previous nursing staff and I felt more comfortable with their skills. We love our regular doctors with whom we have formed relationships, but sometimes other providers I’ve come across can be downright rude or insensitive when it’s really unnecessary. Maybe it’s my lack of sleep, maybe it’s the stress from being in the hospital, but I’m cranky about it. I’m cranky when I have to chase doctors down for answers. I shouldn’t have to call more than once to receive a response in a 24 hour period. Maybe a follow-up call. Beyond that, yes, I’m going to start getting ticked and raising hell. I’m cranky when my daughter is hurting and nobody is doing anything about it and my concerns seem to be diminished like she’s not hurting that badly so I should be patient. I get that the doctors are busy, but is my daughter the lowest priority on their list? I’m cranky when some departments can’t seem to figure out how to run on time. Ever. I’m just cranky with hospital experiences in general. And you know, I’ve made all of these complaints to the hospital itself. We’ll see if anything gets better. But for now, I’m allowed to be ticked off. We have spent so much time here, spent so much money here (no, we’re not receiving financial assistance like so many of the families do) and the bad experiences are starting to stand out more in my mind than the good, which is quite disappointing.

*** Getting off of the soap box now. ***

That being said, we are extremely grateful for the expertise of the doctors here and are soo thankful for the amazing outcome we have had. I don’t want to come off as though I’m not absolutely ecstatic about that. The customer service could just be a bit better…in a number of areas.

Last night, she was being so silly. I asked her if she was a funny girl to which she said “Yes! Fuddy girow! Fuddy!” And then I snapped this picture…

Fuddy Girow!

Which leads me to today. Today has gone swimmingly. She is not in pain and has been eating a little bit since Thursday. Some juice, some applesauce, little bites of sandwich or waffle or eggs here and there. Not a ton, but things are moving along from a bowel perspective. 😉 In fact, she’s been guzzling milk like she hasn’t had anything to drink in days. Everything else is just little bites, though.

Watching the Mickey DVD that daddy bought for her. Much more active, up and about, today.

She has daddy wrapped around her little finger. 🙂

The bummer about a chest tube is that the person with said chest tube is pretty uncomfortable and irritable until it can come out. We were hoping it could come out last night so she could sleep better, but that didn’t go our way. This morning, however, they did another x-ray and the surgery team felt that it could come out. WOOHOOO!! She hated the experience of the tube coming out, but has less tubes now, and can actually move around a little easier. They have also weaned her off of the Hydromorphone. Instead she is receiving Oxycodone by mouth and still receiving the Torodol via IV every 6 hours. The Torodol expires tomorrow morning, I think. Evidently patients cannot be on it for more than a 72 hour period. Once we’re off the IV fluids, she is only getting a very small amount now, and she’s eating normally and the doctors clear her, we should be able to go home. Keep your fingers crossed for tomorrow!!

You can see the difference in flushing in this picture. Once swelling internally goes down post-op, this may resolve, but it may not.

One thing I was worried about pre-op that seems to be OK post op is any further damage resulting in more Horner’s Syndrome symptoms. You might remember last time that she had some eye changes with a droopy eye and difference in pupil size. Those resolved themselves after her swelling went down post-op. Some may think that it’s only cosmetic and who cares? But I think of it like this: She is going to have scars all over her body. She’ll forever be “a cancer kid” with all of the follow-ups and maintenance that go along with it. She could have issues with Scoliosis. She may never have “full” strength in her leg so that she can compete in sports to the level that some kids may. Do we have to add a droopy eye to that? I’d prefer not. Because, let’s face it, other kids are mean. So mean. So if we can avoid adding one more thing to the already long list of things they can find to single her out for, I would really prefer to avoid it. She does have the residual lack of sweating on her left side from the previous surgery. I’m not sure if she sweats more on the right side to make up for it, or if she is just a sweaty kid? But they did warn us pre-op that another Horner’s symptom that some kids who have thoracotomies develop is Harlequin Syndrome.  A flushing on one side of the body, but not the other due to damage to nerves in the region they were operating on. At this point, she is showing this symptom. She is very sweaty (still) on the right side and when warm, she is incredibly flushed on the right side of her face but not on the left side.

This afternoon she took a good nap, but slept late so we had to wake her for medication time, since she has moved on to the oral meds now. Needless to say, she was a pretty cranky girl when she woke up and needed endless hugs until she was all better to watch some more Mickey. She didn’t eat dinner…not totally sure when her appetite is going to get back to normal. I seem to remember her eating more sooner last time.

Getting lots of hugs after we had to wake her up. She was so upset.

Isn't she so cute?? Haha! She's definitely my girl again - much more animated.

To keep her entertained since she is starting to get really antsy, we came up with a couple of things to distract her. 1) I brought a ton of books. Her favorite of which is the book called “Biscuit’s Day At The Beach”. A favorite that she discovered while hanging out with one of our family friends for the day when daycare was closed (thanks Debbie!!). We have literally read that book at least 40 times while in-patient this time. 2) Alex has some wireless headphones, so he brought them and let her listen to music. She was rockin’ out! and 3) I asked if they could bring a stroller, and we took her for a long walk up and down the hallways, around the unit, into different areas of the hospital. LOL. We even came across our old room from the last time she had surgery.

This is how she rode the whole time. She had us cracking up!! It's like she's reclining in a lounge chair!! So funny. She loved the walk so much that after we got back to the room she kept saying "Walk! Walk!" so we went back out for another round around the floor.

Sorry for being so long winded! But, that’s 4 days of hospital update for you. It doesn’t help that I’ve been trying to finish it for the last 24+ hours. I kept getting interrupted or tired and needing to sleep when she did. Thanks all for your concern and well wishes. She’s doing great! Now – if we can just get to a good place and leave the hospital, I will be ecstatic. Once I know more about Madeleine’s care going forward, I will try to update with that, too.

Eye surgery, MRI, MIBG Scan and results! PHEW!

Let’s start off on this medical whirl wind with Madeleine’s eye surgery. She had surgery August 29th (sorry for the delayed update!). We knew this one would be pretty uneventful, so we went into it not super worried. It was a quick outpatient surgery to un-clog her tear ducts so she would stop getting eye infections. We arrived early in the morning, and Madeleine spent the time climbing all over the furniture, like the little monkey that she is. 🙂

❤ this one!!

Then we got called back to the pre-op area. We were late due to construction traffic, so they rushed us through pre-op, which was nice. Normally it takes for.ev.er. Quick change for Madeleine, hugs from daddy and mommy got to go back with her for the initial anesthesia.

Hanging out, waiting for her robe to change in to.

This is a girl who adores her daddy. It's the sweetest!

The procedure was quick, and we were back to meet with the doctor in about 45 minutes. She explained that everything went well and they cleared her tear duct, widened the one that drains down her nose and inserted a stent to keep it from closing up again before it heals. And then the doctor explained that she discovered some rather odd anatomy that our daughter has. **sigh**  If I hear one more doctor tell me that Madeleine has something unique, medically, I might just burst into laughter. I’m not kidding! Every time something with her happens, “oh this is so abnormal! How unique!” And there I am, trying not to roll my eyes at them.

Dr's diagram.

Basically, there are two tear ducts from the inside of the eye. They collect into a little tear pouch and then drain down the tear duct that goes down the nose. For whatever reason (we’re blaming daddy since he had eye drainage issues as a 2 year old, too! Even daddy is blaming himself. haha) Madeleine’s top tear duct does not connect to the little tear pouch. It’s not a matter of clearing a blockage – the duct just comes to a dead end and doesn’t connect. It’s a good thing that 2/3 of a person’s tears drain out of the bottom duct – makes sense with gravity, no? – so we haven’t noticed any problems since the surgery.

She had a slight bloody nose that progressively got better for about a week. She also had a pretty bloodshot eye for about a week after surgery. However, all appears to be good now!

Then, we had her MRI and MIBG scans last Friday. First, we started with having to force her to drink the SSKI fluid three times a day to protect her thyroid from the MIBG tracer. That was a chore and a half. Then, on Thursday we went in for the blood draw and the tracer.

Waiting and watching Mickey!

She did a pretty good job waiting, despite the fact that they were running over an hour late and she hadn’t had a nap. I hate radiology. They are literally never on time. In fact, I submitted a comments card voicing my complaint about this after the numerous times we have gone and they’ve been significantly late. Even at 9 am! What on earth??? But I digress…

She was miserable by the time they gave her the IV. 😦 Poor thing screamed and fussed and was really upset about it. She was even more upset when they taped the IV tube to her arm while we waited for the nuclear med person to come give her the tracer. She kept trying to rip it out, and when I wouldn’t let her she got really ticked. Poor thing!

The next day we were back for her MRI. I was on my own for this one, since Alex is out of PTO for right now. Whoever thought only having 1 time all week  for the MIBG scans and making it for 12:15 in the afternoon was smart is clearly an idiot. If they knew that you were dealing with a 2 year old that’d been begging for a “sack” (snack) since 9 am, they probably wouldn’t do that. So, I already had a pretty not-happy little girl, upon arrival. In fact, when we got back into the room, she started screaming and ran behind the crib and refused to come out. While still screaming. 😦 She must have remembered the appointment from the day before and getting poked. Broke my heart. So we snuggled a bit and I was lucky to find Mickey on the TV.

See how red her eyes are? 😦

Oooh! What's outside?!

The MRI and MIBG scans took 2 and a half hours. And I was trying to work via phone e-mail while we waited for her to go back because work is crazy right now. So, I broke out the laptop in the cafeteria to pass the time while she was actually back there. Much easier!

They’d predicted 2 hours for the scans, so when it was taking longer I was naturally getting nervous. But everything went ok. She came back to the recovery area asleep, still. Of course, with nothing else to do but wait, I took some adorable photos of her.

Isn’t she sweet? 😀

Finally, she woke up and it was zero to 60! She practically jumped up out of the crib. She gobbled down some goldfish crackers, 2 things of juice and was awake enough to head home.

See how drugged up she was at first?

Chewing!

Sleepy!

On a quick side note, she went with me to pick up a quick dinner at Toni Maroni’s pizza and since we had to wait, they gave her a ball of pizza dough to play with. She thought that was fun! And look how diva-licious she is with her sunglasses!!! Her daddy bought those for her, and she loves them. 🙂

Poke! Poke!

Oooh! What is this?!

Which brings us to today. Today was her follow-up with Dr. Park at Hem-Onc.  Alex took her by himself (thus, no photos from me) because I have taken off too much time from work lately and figured I would just call in to the appointment. After a great visit with physical therapy (she doesn’t need to see her for another 6 months!!) I didn’t figure it’d be big news at hem-onc, either. But it was.

It seems as though the tumor has grown. However, the good news is that there was no additional uptake on the MIBG scan, which measures different things than the MRI. But the size of the tumor is somewhere in the realm of 20% larger in mass. Because there is no additional uptake on the MIBG, Dr. Park thinks that the increase in size is may simply be an increase in cell size as the tumor becomes benign – basically. But she doesn’t want to risk that the neuroblastoma could be growing, so she has e-mails in to the surgeons to discuss which surgery option is best.

Dr. Park is thinking that the full thoracic surgery where they open Madeleine’s chest is the best, but she wants the opinion of the surgeons. She would like to get as much tumor out as possible to test. The really good news is that there isn’t any impact showing on her spine, so that is great. That means no nerve or spinal cord damage.

The timeline for surgery is 2-3 weeks. I asked for early October because things are so insane with work right now, I just don’t see how I can take a full week off to be at the hospital with her if she has the larger surgery. Dr. Park is going to check with scheduling to see what’s possible. That’d put us on the week of October 3rd.

One major question for the surgeons is why so much tumor was left after the last surgery. We were told post-op that they got 95% of it, but there is no way that is the case. We want to be sure she’s not subjected to surgery after surgery. Heck, she’s already had more surgeries than Alex and myself combined!! And he’s had a hernia repair and neck fusion in the last few years. Anyway, I’m not pleased about the results of the last surgery, so I have some reassurance needed before this one.

I’ll do my best to keep the blog updated as I know more, but be patient with me. I don’t have as much time as I did before, when I wasn’t working.

Keep our little girl in your thoughts! She’s got another doozy of a surgery ahead of her.

And, on a lighter note – perhaps we can keep her entertained in the hospital with bubbles!! They are one of her favorite things these days 🙂

It has been 1 year

Yes, one whole year since Madeleine was diagnosed with cancer. An entire year. Wow.

On the one hand it is so hard to believe that we have now lived with cancer for more than 50% of her short life. On the other, it seems very difficult to remember a time that was not tainted by it and the doctor’s appointments and worry that come along with this type of diagnosis.

However, despite the difficulty she has faced this past year, we have also had some amazing things happen and are so very very thankful for those things.

So, on this bittersweet anniversary, we choose to remember the sweet. Her incredible strength while going through treatment with all of the surgery, pokes, prods and doctor’s visits.  Her fighting attitude to learn to move, crawl and walk. The loving support of our family and friends to help get us through the sleepless nights, exhausting days and worry-filled appointments. These are all things that made the experience better than it could have been.

We have grown as a family, seen people’s true colors – in good ways and bad, and learned to truly appreciate each other, the life we have and the time we spend together.  We have come out on the other side stronger and wiser and with so much love for our little girl.

MRI Day

Today was another adventurous MRI day for the Tomlin household. These days are always long and stressful for all 3 of us, but today was exceptionally long and stressful since we were waiting to find out if her tumor is really growing, as is a possibility based on the last MRI.

First, the MRI. It went as expected. I was a bit of a mess after she went back just because I was so worried, I think. Alex and I went to get some food and Starbucks and when I went to pay, the cashier told me that the woman in front of me had already covered it. Alex and I both looked at her and she said that she pays for young families from time to time when she sees them in line. She pointed at our stroller and said “I know where your child isn’t, which means I know where she probably is.” and I just about lost it. I am not normally so overly emotional about MRI’s, but this one was so scary. 😦 Anyway, it was very very sweet of her to do that, and it meant a lot to us that someone would be kind to complete strangers on a rough day.

The MRI went smoothly, as usual. She was asleep when they brought her back to the recovery room and she slept for about half an hour.

Passed out

Such a little girl. Sometimes I forget.

See!! Look at that tiny, sweet hand.

After she woke up, she got to snuggle with her daddy and have a snack of milk and goldfish crackers.  Daddy asked her if she wanted to share with him, and she took her fish cracker, put it up to his mouth and then pulled it away again! Then she proceeded to put it in her mouth and eat it. And giggle. All while her daddy looked down at her in shock. Haha!

So cute.

Look at her cute little smile. 🙂

See? Then she pulled it back out and stuck it in her mouth. Eww! haha!

We then went to the cafeteria and had some real lunch since she hadn’t eaten a meal all day, other than the aforementioned snack. She really enjoyed eating and gobbled food down! And then came the waiting game for her hem-onc appointment with Cori. We had nearly 2 hours to kill, and Madeleine had made up her mind how she wanted to spend those hours. Exploring. That’s right! She walked all over the 6th floor of that hospital today, and she did such a good job!

Evidently she got tired of walking at one point, and laid down on the carpet. ?? What the heck?!

Finally we were called back, but then we had to wait another 45 minutes before we got to see the doctor. Needless to say, Madeleine was getting more than a little antsy. So we walked up and down the hallway and colored and just generally tried to keep her entertained. During that time, we practiced saying “Cori”, but Madeleine couldn’t quite get that. So instead we practiced saying “hi” and “doctor”. 🙂 She got those down and said hi to Cori that way!! It was so cute, and seemed to make Cori’s day.

Madeleine showed Cori her walking skills, her squatting skills and her just general cuteness skills. But the very first thing that Cori said when we were in the room was: “So, her MRI looks the same as it did last time.” Phew! 6 weeks of worrying and wondering all for a quick, 5 second sentence.  We are not going to have another MRI for 3 months and will go back to her previous maintenance plan from before with monthly blood work and MRI’s every 3 months.

By the end of the day, the poor girl was so tired, she passed out in the car on the way home and then re-passed out after her daddy got her out of the car.

So sleepy

Overall, great MRI results, an exhausting day and hopefully Madeleine sleeps REALLY well tonight! 🙂

Another long MRI day

After changing into her gown

Today was Madeleine’s 2nd post-surgery MRI.

 

Playing with daddy's phone to pass the time.

The actual MRI was uneventful. We were taken back on time and she was taken to the bed for anesthesia on time. She didn’t get overly hungry (probably because I woke up at 2:15am to bring her down for a meal since 2:30 was her cut-off for food). She woke up relatively normally and drank milk and was fine. So then we got to leave the MRI area – and had 3 hours to kill until our hem-onc appointment.

Rockin' out to Lynyrd Skynyrd with daddy

First, she had some brunch (only because it was 11am and she didn’t have any breakfast). She thoroughly enjoyed her grilled cheese and orange slices. Then we went up to PT and scheduled her next appointment for next week. And then we went to hem-onc to wait. This included some trips to Starbucks and the bathroom and little “walking” expeditions down the hall for M to move around and not just have to sit in her stroller all day.

Post MRI, still out.

Such a little angel

Her height and weight are doing awesome. She’s gained about a pound since last month and is currently at 23.5 pounds. She’s also gained another inch of height, so she is at 31.5″ now!!

"ooooooooo" LOL! We were working on different alphabet sounds.

Which leads us into the doctor’s appointment. First we reviewed all of her movement, new skills, talking, etc. Cori was quite pleased with all of that. And then on to the MRI reading. Cori started with “Now, don’t kill me.” Alarm bells!!!WHAT?!?! Don’t kill you?! You’d better tell me right now what you’re talking about or I just might! Kidding! Kind of.

MRI results were not good, but not bad, either. What does that mean? I’m still trying to figure it out, myself!

Good news: There is no measurable growth of the tumor.

Bad news: Even though there is no measurable growth of the tumor, it appears to be bulging slightly in places where it was not before.

Good news: Dr. Park said she has seen this before, and it turned out to be nothing. Sometimes the places they do the cross sections in the MRI aren’t quite the same and can cause this effect.

Bad news: It means her tumor could be growing again.

Good news: They are going to monitor her even closer, having another MRI sooner than the 3 months they would have normally.

Bad news: There isn’t much point in doing that MRI any sooner than 6 weeks, because there won’t be enough noticeable change any sooner than that.

Good news: They did run the neuroblastoma blood test, which tests the NB markers in her blood. We will have results of that later this week.

Bad news: The markers don’t always go up, even if the tumor is growing, so if there is no change we still will not have any sort of answers.

Good news: If it is nothing after the next MRI, we can continue with regular maintenance.

Bad news: If it is tumor growth after the next MRI, they will have to evaluate options. Including chemo, surgery and neuro surgery.

As you can see read, today was very up and down in terms of emotions. Alex and I both left completely emotionally depleted after having had such a good stretch of time with no bad news. They kept saying that this was not for sure a bad thing, that they just didn’t know and that they’d rather be conservative than just not doing anything. Great, but still.

Playing with the x-ray light wall while we waited. This was a super fun game haha!

I will say, I have been having really scary feelings about this appointment today before it happened. I finally gave in and called Cori this weekend and she reassured me that her tumor was more than likely just fine and no, she didn’t have a tumor somewhere else and that we’d know everything for sure on Monday (today). The moment Cori said “Don’t kill me” my heart sank and I had probably the 2nd most gut wrenching feeling I’ve ever had in my life. The first being the night that the ER doctors told us she had cancer. This limbo is so difficult and I’m sure I’ll be watching her movement like a hawk for the next 6 weeks. In fact, I am going to talk to her physical therapist about scheduling more regular PT until that next scan is done. Just in case there is any weakness, Leslie will see it before I do.

All in all, a tough day for us. Please keep her in your thoughts that this tumor is not growing and it was just a weird MRI today. 😦

“One Big Kiss”

KISS 106.1, a local radio station here, was doing a telethon over the last two days. It’s called the “One Big Kiss Telethon” and all monies donated go to Seattle Children’s Hospital. To the uncompensated care fund, which pays for medical treatment for families who don’t have insurance or can’t afford treatment so that no child goes without care. Amazing!

I wasn’t aware of it yesterday, but listened almost all day today. A friend (thanks Jamie!) alerted me to it this morning and it is an amazing event hosted by Jackie and Bender, who host the morning show on KISS. We donated our portion and I called in to share Madeleine’s story of hope and miracles – in the hopes that other people would be inspired to donate because of the amazing work that the doctors, nurses, physical therapists and surgeons do at Children’s.

One goal I have in parenting Madeleine is to teach her that community service and giving is very important. That being selfless and giving back are humbling experiences and only good can come from that. So, as the years go on, I want to keep Madeleine involved in activities every so often so she can see how she can serve in her community. For that reason, we drove over to Seattle Children’s this afternoon to go see the telethon and introduce her to Jackie and Bender. I figure, as the years go on, she can start getting involved in volunteering to help with the telethon. Unfortunately Bender was busy, but we did get to talk to Jackie and share her story a bit more. We also got to take pictures with Jackie! Madeleine was being silly and shy though. She looked awfully disgruntled by all of the people and commotion, which was actually quite hilarious.

From my cell phone. Madeleine with Jackie. Look at her face!! LMAO!

Courtesy of the the KISS 106.1 website

She kept giving her doggie kisses. 😀

We were trying to get her to do something cheerful. LOL It didn't work.

Thanks so much to KISS 106.1 for running this telethon for 10 years! Thanks to all of the volunteers and people who contributed to an incredible cause!