How's the adult infusion center experience going you ask...

 Not great.  Not great. She's been to 3 and we have experienced the same nurse.  In all my years working in healthcare, I can't even think of a nurse who ever behaved in front of a patient this way.  She curses, she's always at a 10.  She's never mean to Lillian so to say, but this last time was all I could take.  Admittedly, I have been in a hard place these last 6 months, surgery, chemo...maybe I'm just tired, but I just can't even think of dealing with her again. So, we saw GI for follow up and we are switching locations.  Please pray this is a better experience.  If you know me, you know I do NOT enjoy all this upheaval with new doctors and locations and such...AND even though she is 18, she's not an adult. It's just inappropriate, this nurse even refers to herself as the inappropriate nurse and she thinks it's funny.  Well, I just don't think she really cares.  What really gets me is I think she's just bitter and sad, and that's sad.  I also get annoyed when they miss her veins or blow them which is usually what happens and they blame it on her.  "she's dehydrated" "caffeine is bad" Lillian gets the same diet, fluids, nutrition every day around the clock.  Also, I mistakenly grabbed the wrong extension tube for her meds and they had no means of giving them, so most of it wound up on her clothes and then the nurse asks me when do I want to start her infusion???? HELLO.  So, that was her July 3 infusion.

She did start receiving SSI at the end of May.  Much sooner than we expected.  She also got accepted to the bigger waiver which we are still hanging in limbo for.  She has had appointments with GI, Pulmonary, Gynecology recently.  All went fine, Her cycles have been controlled since January, but of course she has one days after we see the Gyno.  UGH. 

I am delighted to be finished with chemo.  My blood marker is normal and will start getting scans every 6 months for a couple years. (and blood work)  I did get a kidney infection after my last chemo and it was rough.  He said that is kind of common for people after chemo ends.  My symptoms were so much worse with the last treatment and lasted much longer.  He said that is typically with the drugs I was on.  I am starting the feel much more normal.  I still have chemo brain...it is real.  I can't believe it is August and school has started.  Pray for Ezekiel, he started in a brand new school.  He says it's good and even though I know it was the Lord's leading, I felt bad for him not being with kids he's known his whole school life.  We didn't move so I know those friendships will remain.  

Sorry for the long gap in updating, but chemo.  I think that's all I need to say.  Thank you for your prayers, love and support.  The journey continues. <3

Dr Blood Yearly visit

 Lillian saw her hematologist yesterday.  I like him, he's very compassionate. He can only continue to see Lillian another year or so and then we will have to transition to adult medicine Hem/Onc.  Strangely, though they are Norton Physicians Peds, they don't have affiliations with Norton Adult Hem/Onc.  They do, however, have affiliation with UofL Hem/Onc.  So, he said he could go ahead and refer her now to transition if I want them to. I said well, I'm not a huge fan of moving her yet, but whatever has to happen, must happen.  At the beginning of the discussion, he asked how we were, my response, " I've had better days, chemo sucks".  Lillian had also been sick so it's been craptown.  Didn't say that but I'm saying it here.  Here's where his compassion came in,  he said "you're going through enough, right now, we'll revisit this in a year.  Praise the LORD. Seriously.  He ordered her some blood work but due to the fact that she's still battling snotpocalypse, he said one of them wouldn't be accurate. So, she has her next infusion in early May, so we are going to get the blood then.  They still consider her a "tendency to bleed" rather than a bleeding disorder.  He ordered us some more amicar (bleeding preventative.) 

We then had Olive Garden, because the queen asked for it.  The waitress was so gracious to bring my drink (even though I could not drink it) in a plastic cup.  She also brought me plastic tableware.  I can't touch/drink things that are even remotely cold without burning.  (Making caregiving even more difficult) What I did eat (as eating this past week has been scarce) tasted so good but eating little still made me sick the rest of the evening.  First world problems, right?  

Lillian having Crohn's disease makes her more susceptible to colon cancer.  Me being diagnosed with colon cancer, makes her even more prone.  Going through what I'm going through right now forces me to consider if I would put her through this chemo process and it's agonizing. This is not something I dwell on (my Mom would say don't borrow trouble) but these are things I face given our circumstances.  So, I'm getting it out of my head by writing it here. 

Keep our son in your prayers as well.  He's 11. This is a LOT for him to process.  He had a huge breakdown a couple of weeks ago and it was HEART BREAKING.  Lillian was so affected she called almost all of her sisters at 230am in the  middle of the night with worry, which made them all worry.  So I had missed calls from them at 230.  When I called to find out what was going on, I then had to retell the story.  This is hard.  I'm emotionally wrecked due to the steroids and you all know I'm emotional as is.  I have physical pain to deal with, but it pales in comparison to the mental anguish of my kids.  

But, He is sovereign.  He is good.  This will all be for His glory. I heard a sermon recently, the pastor is a childhood friend..well we grew up together in church, he mentioned submitting to your circumstances is worship to Him.  That really resonated with me. (hope I'm paraphrasing that right) All of the sermons I've been hearing have been speaking directly to me.  I know that is no accident.  God has already placed me in a position of allowing my situation to allow a total stranger to share his journey with me. Honestly, I think the Lord just knew this man needed to speak about his wife who had passed 15 years earlier of colon cancer.  And there I was, just able to listen and let him share his heart.  

This is hard and getting harder.  But God.  (that's a litte reminder from my Pooh)

Adult infusions, Social Security...psch evals

 Lillian started infusions at the adult infusion center in KY in March. Everything is quite a bit different when you enter the adult realm.  They didn't do any blood work.  They were not going to give her premeds, but I insisted.  We've since seen the GI doctor (not NP) who stated blood work was only needed every 6 months and that he also didn't want to upsize her gtube...so we will just deal with the leaking. He does say she will continue to get premeds though.  Also, I didn't have our guardianship papers with us (and even though I had a photo on my phone) they made her squiggle on the signature pad.  Now, how can someone be made to sign something they don't even understand???????

We applied for her to get SSI. I got a letter Saturday that she will have to see their chosen psychiatrist for evaluation and testing. (to make sure we're not lying of course)

She struggled with sinus infection this week and it's been yuck.

  This past week was also my 3 round of chemo and it gets worse every time.  

Grateful for your continued prayers and support.  

In His Love, 

Michelle

Updates and updates

 Guardianship: We did go to court for legal guardianship and the judge approved our petition...there you have it folks...we're LEGAL Ha! I still need to get her to SSI to file for disability but time has been not been on our side.

Adult GI: She saw her adult GI for the first time and it was a great visit.  She is scheduled to start her infusions at the adult infusion center come the end of March.

Toe Warts: the warts we had been so aggressively battled on her toes just disappeared.  Craziest thing ever, but really a miracle.  No dermatologist after all.  Whee!

Flu: the flu finally caught up to us from little brother who was home sick about a week and Lillian came down on the Saturday just as he got better.  It has been rough.  We've been dealing with that this week and it has been rough on her.  She still needs frequent treatments but she is sleeping much better.  Again, so grateful to have managed this at home. She's finally up and trying to eat again, which even though she doesn't swallow this girl likes to chew.  She's chomping on sour cream and onion pringles as I type.  

Pulmonary: we do NOT have to move to adult pulmonary at this time which I'm grateful for.  

I am now Lillian's home health aid.  Since she turned 18, I was able to take classes and be state certified to be paid to be her health care worker.  A HUGE BLESSING.

A note about me: I did have surgery on January 31st.  The surgery was not able to be accomplished the "easier" way, so I have been recovering from a very invasive abdominal surgery.  (think of a gutting a deer or dissecting a frog in biology, yes, I'm serious) I spent four days in the hospital and have been slowly, steadily recovering.  I still have lots of restrictions for activity.  I'm still sore and I've discovered muscles in my legs I didn't know existed. I would ask your prayers as I will undergo chemotherapy very soon for a period of three months.  I rest in the sovereign Lord and knowing none of this surprises Him. Am I nervous? Yes.  I'm concerned about my ability to care for children, especially Lillian.  Not to mention maintaining my home. I do have a wonderful village of caring friends and family as well as all you prayer warriors out there.  Keep them coming. 

I'm tired.   😐  This healing and Lillian's sickness have been a double whammy.  I'm grateful we are heading into a warmer season. 

Where shall I begin

 18 brings new and stressful changes.  Today Lillian saw a new GI doctor in the adult med realm.  She will continue treatments just the same but will transition to adult infusion center.   I've been locked out of her mychart because she's 18 and they will NOT unlock it for me until we have proof of legal guardianship.  Our court date is January 29th.  I'm not sure, at this point, how many of her specialists we will transition out of but I'm trying to be prepared for it.  

She's been relatively healthy, although she is struggling with some bowel issues, but it is not a Crohn's flare...the new group wants me to start her on benefiber to see if that helps.  She and I are both at the tail end of an upper respiratory infection, but we've managed here at home.  We can finally get back to church Sunday.  (we moved to the balcony, though and she hates me for it)

Officially, we had her last infusion Wednesday at the Novak center.  Her care will remain in KY. At the infusion she watched the movie FLICKA.  She was crying at the end, but she still enjoyed the movie.  Then we found a DVD of the brady bunch sitcom, and she loved it.  I knew she would.  

I'm not sure if I updated about immunology, but they want to see her again to continue to rule out CVID.

This evening, she got to hold her newest niece who arrived 5 weeks early.  She's such a little peanut and Lillian smiled ear to ear the whole time she held her.  These moments are precious.  

Our little granddaughter Sunny is home and growing.  She is a doll.  She likes to talk, talk, talk.  We got to spend some time with her and big brother on Saturday.  

Life is never without it's surprises and struggles it seems.  I would ask that you continue to hold our girl in your prayers as we brave the flu season.  I would also ask that you keep me in your prayers, though I will not go into detail. All I will say, is surgery is eminent and I'm nervous about it.  My hope is in the Lord, and nothing is a surprise to Him.  If you're in a struggle, try to cling to that because that is what I am doing.  Blessings friends, thanks for praying and stopping by.

18

 An evening spent with family and dearest friends.  Pizza, Cupcakes, presents...JOY!!!! Lunch at Chili's and shopping until you drop with Grandma.

Thank you Lord.

Pulmonary, Infusion, Endocrinology, and warts, OH MY

 It has been a busy couple of weeks. Lillian followed up with two specialist and also had her infusion.  That's a lot of trips to KY, y'all.   Pulmonary added zyrtec to her meds as she seems to be struggling since we've had some outside time.  It helped immediately, but unfortunately brought on a rough, long nose bleed on Saturday, so trying to find a balance there.  It's a vicious cycle.  Drainage equals irritation, irritation equals inflammation, inflammation triggers asthma.  Sounds like she has to stay on pulmicort nebs twice a day now to manage her asthma.  Discouraging as it indicates worsening lung function.  

Endo ordered spinal xrays due to worsened DEXA scan results.  No fractures from what I read but I haven't been officially notified by the team.  She wants to see her again in 6 months.  Could not pin her down on her thoughts on giving depo closer together.  

Gynecology won't write us a script for depo to be given every two months, she wants me to notify her every time the dose is due to see how she's doing.  (super easy and convenient, right?)

Lillian has been dealing with warts on her toes for some time so we are going to need to add another specialist to the list because despite all of the efforts I've tried, they have failed.  

Immunology wants to check her again in 6 months as well, as she didn't respond very well to the prevnar vaccine.  Her IgG is still low as well.

We no longer have a respite care provider.  So there's that.  

Our little Sunny is very close to getting to come home.  Please keep Sunny, Rebecca, Aaron, and Sloan in your prayers.