Angel's Make a Wish DREAM Cruise/extended days at wdw 4/13-25 PTR :)

[JWCJ]

Goodness Christi, I just read this entire thread... What a rollercoaster you guys have been through. I'm sorry that so many things have been happening to stress you out.

Sometimes I think you just have to close your eyes and fall and trust - and hopefully those days at Pop will turn out to be extra special and memorable.


Your post about Angel reacting to the immunosuppresants might give me nightmares, though. Jace is on Mercaptopurine and we had read about the slight chance of a reaction like that. There's actually a blood test they can do prior to starting the 6MP and we requested that. Well, luckily Ja wasn't one of the ones that reacted, because we found out 5 MONTHS LATER that the bloodwork had been incorrectly processed and the Drs had never told us Oh man, I'm pretty sure W had never seen actual flames coming out of my ears before....

 

[angel's momma]

Thanks Jo.

So sorry the Drs. never told you about the mistake, and so glad Ja didn't have a reaction to it. It is so frustrating to find out things way after the fact. Just tonight I was talking to another mom who has a teenage daughter with SAA, and she is getting one of her meds through her line - Angel's Dr. insisted that med could only be given subQ, so Angel had daily shots for 3 months, and he knew how afraid she was of shots.


I realized I never posted the pic of the magnets we have so far for our state room door. Thanks to Mandy's amazing abilities & generosity, I was able to print out designs on Snapfish. These are the magnets Angel got in her stocking:

Milliepie kindly made me some more amazing designs, but Angel has to wait until Valentine's Day to get them.


Angel took her driving permit test today, and didn't miss any. I wouldn't be ready for her to start driving under normal circumstances, but with her condition it's really nerve wracking.

Got her semester grades: 3 A+'s , 4 A's, and a B in the class that she didn't receive all of the materials she needed. Pretty amazing considering everything that happened last semester. Hoping this semester is less eventful.



This is the metaphor poem she wrote for English class yesterday:

I am a spring.

I appear to be simple,

But am more complex than I seem.

At first I seem all shiny and new.

But then someone steps on me,

Leaving me dirty and stained.

But then, I spring right back up.

The dirt and stains are just proof of disappointments and failures that I've experienced.

Then, someone or something new comes along.

Once again I become shiny and new.

Once again I start a new journey and adventure.

 

[angel's momma]

It's been a year since what we thought was a relatively minor Dr. visit ended up being a major medical situation.

The issues with her jaw that were the reason she had the appt. have never been addressed beyond the dental resident that saw her last March while she was inpatient 2 weeks for fevers, and he totally over reacted & told her she shouldn't chew food. The issues she has with her jaw are no where to the extent that she needs to be on a liquid diet, so we ignored his advice.

It's been the longest, hardest year we've ever had, and yet it seems like it can't possibly have been a whole year already.

One of the blessings that has come from all of this, is that we found the Wish Trippers. We greatly appreciate the prayers & the support that we have received here on the DIS.

 

[NEmel]

It's been a year since what we thought was a relatively minor Dr. visit ended up being a major medical situation.

The issues with her jaw that were the reason she had the appt. have never been addressed beyond the dental resident that saw her last March while she was inpatient 2 weeks for fevers, and he totally over reacted & told her she shouldn't chew food. The issues she has with her jaw are no where to the extent that she needs to be on a liquid diet, so we ignored his advice.

It's been the longest, hardest year we've ever had, and yet it seems like it can't possibly have been a whole year already.

One of the blessings that has come from all of this, is that we found the Wish Trippers. We greatly appreciate the prayers & the support that we have received here on the DIS.

YEA for this year being better!!! Glad you are getting some info from MAW hoping you hear some dates soon!

 

[angel's momma]

Thanks Melissa

 

[Rx774]

9 pages in... finally caught up!

Wow. All i can say is that it takes a strong, loving, caring family to endure what you've been through with Angel, and still have your sanity. I'm sorry that her full with to go on the Fantasy was not fulfilled. You are right, everything i've read on her tells me that some chapters play by different rules. I've run into a couple of concerns with my chapter, but i've done everything to keep the piece, because i know, in the end, they are doing the best they can, and it can be difficult at times to accommodate all the wishes.

I also don't envy you guys, with all you have to deal with in regards to her low immune system, and the hurdles that come with. As a parent of 2 organ transplants, its been a nightmare at times for us as well. My daughter has had severe infections including mrsa. My son has had minor kidney damage because of the toxicity of his Tak meds. And the poor boy stays in the nurses office cause of the "concerns" they have over an inflamed eye, or whatever else they see as upsetting. The thing is, they know my son's and my daughter's history ( who graduated from the same school) we provide full documentation, doctor's notes, etc. But i can't help but feel at times, they think we are being neglectful to send our kids to school. If people haven't walked in your shoes... they just don't get it.

Since Angel's cruise comes before my daughters, we are living vicariously through you guys.

Good Luck.

 

[angel's momma]

Thank you Rx774 Not sure we do still have our sanity.
So sorry for all your family has been through You are so right about people just not understanding what our families go through.

 

[angel's momma]

Had clinic today, and the next one will be in a month. Hard not to worry about ANC for that long, even though we've been doing this for several months now.

When Angel wasn't attending school, or when she was doing it through the computer, it didn't really matter how long clinic was, and most days it was really very quick. Now that she's back in school, it's harder to make up missed classes, and now that she no longer has her line, having her labs drawn adds a lot of time to the clinic visit. Today was the longest visit we've had since July.

I could tell from Angel's face that the blood draw hurt even worse than last time.

Was really hoping for improvement in the ANC, which didn't happen, but very relieved it didn't drop.

Another increase in hemoglobin put it .1 over the normal range - had to laugh that it was marked as HIGH.

The exciting news is that the platelets increased from 67,000 to 83,000 Still low, but that much closer to the current goal of 100,000.

 

[JWCJ]

Yay for platelet increases! And, as you know, I totally understand the month between ANC checks being scary. But.... Less poking, I guess? I'm sorry for Angel that it hurts so much. Does numbing cream (it's called EMLA up here, not sure if it's the same in the US) help at all or do they just have to dig too much for something like that to help?

It must be hard in upper grades with missing classes like that, but it looks like you have a super smart kid on your hands and she'll be fine. Better the occasional clinic visit than huge amounts missed right? (Lame attempts to find silver lining!)

 

[angel's momma]

Thanks Jo I told 2 of the moms at clinic yesterday (their boys also have ALL) that Ja doesn't have weekly counts done, and they were dismayed. I forgot about EMLA, but I know when it was discussed before she had her line out, they said it would add about 30 min. to our visit, and Angel decided she'd rather just get it done & over with.

 

[JWCJ]

Thanks Jo I told 2 of the moms at clinic yesterday (their boys also have ALL) that Ja doesn't have weekly counts done, and they were dismayed. I forgot about EMLA, but I know when it was discussed before she had her line out, they said it would add about 30 min. to our visit, and Angel decided she'd rather just get it done & over with.

They sent a tube home with us (and up here we can get it at a pharmacy). Put it on before you go!

 

[angel's momma]

Just asked Angel if she remembered anything about the EMLA, and we weren't given the option to do it at home because of the length of our drive, and she reminded me that we were told that since they don't know where they'll be able to draw from, she'd have to numb too many places. If the draws continue to hurt so much, we'll see what options she has.

 

[pinkorange]

I don't think I caught all of the conversation about counts, but just in case this helps I thought I would mention it. My daughter has a port (and we use the lidocaine cream for numbing if they are going to access that) but if she just needs to give enough blood for a CBC to get her ANC, etc. they just do a finger prick. Usually her ring finger and then the tech "milks" her finger just a bit to get enough blood for the labs. She much prefers that to a needle access.

I love Angel's giraffe costume picture. What a fun idea for the kids!

 

[angel's momma]

I don't think I caught all of the conversation about counts, but just in case this helps I thought I would mention it. My daughter has a port (and we use the lidocaine cream for numbing if they are going to access that) but if she just needs to give enough blood for a CBC to get her ANC, etc. they just do a finger prick. Usually her ring finger and then the tech "milks" her finger just a bit to get enough blood for the labs. She much prefers that to a needle access.

I love Angel's giraffe costume picture. What a fun idea for the kids!

Thank you Paula

Angel had her line removed in Dec., and was told that the blood draws would just be a finger prick, but when we got to the lab for the first time after the line removal, we found out that's only true if it's just a CBC, and Angel has to also have a CMP, which requires a regular draw.

 

[angel's momma]

Called about my birth certificate again today. When I called last time, I was told that it was already being processed, and should be mailed within 10 business days, and I could call back if I didn't receive it a week after that. Today I was told it was already being processed, and should be mailed within 10 business days. I had a feeling last time that I was just being brushed off. The person today didn't want to pursue it further for me either, but finally agreed to see what they could do. Didn't do much good, came back & said there was nothing to be done to speed it up, but did end up saying they felt it would probably be done by Friday. Still feel like they just wanted the call to be over.

Looked into travel insurance that covers pre-existing, and we can get it, but has to be purchased within 14 days of booking the room. Today's 14 days, so yesterday I re-booked (happily there's still room availability with the discount), and now have to cancel the original. Still can't get the trip insurance yet, because we may not be going on those dates at all. If we don't have the dates approved soon, we'll reach the 45 day mark, and will have to pay the room in full when it's booked, and the insurance will have to be bought at the same time, so it's tricky, and stressful.

Found mouse droppings on the kitchen counter yesterday. That's problematic for anyone, but even more so for us. Hoping it's just one mouse, and that it's caught tonight. We were careful about germs before Angel's diagnosis, but after a year of needing to be extremely careful, our house is the only place we've been able to control, and now I don't even have that control.

The good news - Angel received some wonderful pixie dust in the mail. I had planned to get pics taken & posted, but the mouse situation prevented that. Hopefully later today.

 

[NEmel]

YEA for increased platelets!! We use emla cream for weekly treatments as well as blood draws. I usually just numb both arms, doesn't hurt anything. I hope they figure out your bc issues and get it to you quickly. I totally know how you feel about waiting for dates. Doesn't you chapter cover you with insurance? That is the main reason we couldn't extend is that they are responsible for us from the time we leave till we get home. Hope your little visitor is gone.

 

[angel's momma]

Thanks Melissa

For the emla - do you do one area on both arms, or the entire lower arm? We were told they could draw anywhere from the inner elbow down to the hand, and that it would be difficult to numb both arms that widespread.

We were told that our extension is totally our responsibility, and that it has no connection to the MAW portion of the trip. We were also told that our dates would be approved within a week (which I thought was highly unlikely, but only based on what I had read here - without the DIS I'd really be wondering what was going on), and that was almost a month ago, so I can't say I have much confidence in the knowledge of our coordinator or granter.

 

[JWCJ]

Blech! Hope you catch the critter soon - and that it IS just one! We had mice when we lived in a highrise condo years ago (right above the garbage room; NEVER AGAIN!). W used to work as an overnight radio DJ, so I was home alone, and a stupid mouse got it's tail caught in the trap at 2 AM and then got stuck under our fridge. It squealed for the rest of the night Ugh, just thinking about it gives me shivers. Probably contributes to my insistence that we always own two cats nowadays

Birth certificate sending vibes heading your way!

Oooo, I wanna see Angel's pixie dust! (Don't mind me, I've been dealing with preschool and kindergarten Valentines. The bright colours have sent me off the deep end. It is definitely not a result of me sampling the candy hearts )

 

[NEmel]

Thanks Melissa

For the emla - do you do one are on both arms, or the entire lower arm? We were told they could draw anywhere from the inner elbow down to the hand, and that it would be difficult to numb both arms that widespread.

We were told that our extension is totally our responsibility, and that it has no connection to the MAW portion of the trip. We were also told that our dates would be approved within a week (which I thought was highly unlikely, but only based on what I had read here - without the DIS I'd really be wondering what was going on), and that was almost a month ago, so I can't say I have much confidence in the knowledge of our coordinator or granter.

They always draw from his veins in elbow area so I put a little cream on the vein, cover with saran wrap and wrap his arm in coban. It is wonderful!!! Fingers crossed for dates!

 

[blessedmom4]

They always draw from his veins in elbow area so I put a little cream on the vein, cover with saran wrap and wrap his arm in coban. It is wonderful!!! Fingers crossed for dates!

Christi,
Exactly what I was going to suggest! I am sorry the blood draws are so painful for Angel. So sorry to read the BC is still an issue and now you saw evidence of a mouse...you need a break!

Sending HUGE hugs and prayers and a lot of love your way!!!

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