Surgery and SKYPE ROCKS!!!

The last few days have been hard. There's no other way to put it. I went to the orthopaedist to get my MRI results yesterday, which was something that I have been dreading. I would much rather have my teeth drilled, get up and speak in front of thousands and sing karaoke with a cold than get the results of the MRI. Frankly, I knew what they were going to say. I knew he was going to tell me I had a badly herniated disc and that I needed surgery. My fiance had already looked at the MRI films, as had I, and we had been able to see clearly that there was a bad herniation and a degeneration in another disc that isn't far behind the ruptured one. I have been in a lot of pain, but have put it off for months because of the kids' problems.

And, well, I just don't like the idea of having to have surgery... but after the GI doc told me I can't be on anti-inflammatory meds anymore because they're tearing up my stomach, well something had to give. A few weeks ago, when I threw my back out as we were going in for Sophie's MRI, I knew I needed to do something. So, I got into the room and heard the doctor's squeaky tennis shoes creeping closer to my door. He put his little rubber hammer down, and said, "Let's just talk..." I said, "What did it say?" He tactfully tried to lay out my options, but explained that he knew what I would probably want to do. He said that epidural injections and PT may buy us a little time, but that surgery was going to give me quality of life and prevent nerve damage. I am scared to death at this point. So, he talks a little more and all I can hear is "Wah wah wah (think Charlie Brown's mom here)" and I am led by the Yale educated doctor out to the screen where he shows me my MRI pictures in more detail. He says, "here's the herniation, and here's where it's pushing the nerves that control your left leg, and your right" All I could do was choke back tears as I walked back to the exam room. I said that I needed to know what kind of recovery was involved in something like this. He explained, and I probably heard half of what he said. He gave me a pamphlet and then said to think it through and to let him know, but encouraged me to get on his schedule because he only does surgery one day a week. I thanked him and a nice young lady walked in and had me go out into the waiting area. A thought cloud formed above my head.... "Surgery??... Sigh... Don't they know my daughter has LCH and my son has Epilepsy and CP? Don't they know I have a friggin' nough on my plate without THIS?" I started to text my family and then got called back to get on the schedule. I talked to my family and friends and am definitely getting a second opinion. Please say a little prayer for me. I would be grateful!

Well something absolutely wonderful happened tonight. I got to talk to Sophie with Aiden in my lap while she was in South Padre Island visiting the other side of her family. Though some people may not think this kind of technology is amazing, for us it absolutely was.

See, I have only been using Skype for a few months. And, well Sophie was just diagnosed with LCH in January, so having her gone this summer has been a gut wrenching time to say the very least. I also was absolutely amazed to see the two kiddos interacting. And, as a bonus, Aiden initiated a lot of their interactions, from "fist bumps" to "high-bye" (aka. high-fives) as well as blowing kisses over the computer. To me, with his developmental issues, and yearning to see her sweet face again after all we've been through this year, this absolutely and 110% MADE MY DAY. Sophie's dad and I may not always get along, but he and his mom get major brownie points for facilitating this interaction. Thank you.

My thought for a Tuesday... Tonight I want to pray for all the parents out there. I want to pray that God come between you and your ex and/or current spouse and intervene in a way that is positive for the children. May you always remember that there are precious little hearts and minds at stake in every parental situation and may you be blessed in knowing that you have the power to enrich them. May every day you be granted peace in knowing that you made the best choices possible with the day you have. Today is all we have, people. You can plan for tomorrow, but LIVE LIFE FULLY TODAY.

Dear God,

May we find peace in knowing YOU more. May we share you with our children through our example so that our children will see the love you first gave to us through your Son, Jesus Christ. And tonight, may we remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." God, we try to make the best decisions for our children and ourselves TODAY. And, in spite of our mistakes, you remind us continually that you've got us covered for tomorrow without us having to do anything to earn it. God, help us to have peace in knowing that you've got our back, and that you will give us the stamina to push through another day and live it fully through your strength and love.

Amen.

Goodnight friends,
J

Wedding Fun...

This is going to be so much fun... Adam and I are both looking forward to our day, and to make it beautiful AND fun for the kids...


The wedding planning is well under way though the wedding is one year away. I have searched and searched and will search some more, but wanted to share with you the list of questions I sent to the reception catering coordinator. I thought that having these questions readily available to you might be helpful if you ever have an event to plan.

We are getting so excited. Here are some inspirational pictures...

The thought of having brooches all over the boquet brought back the feeling of a retro 1930's old hollywood vibe, that I am SO attracted to. I think I could make this bouquet easily with some time... oh wait, I have a year! lol...

I tagged this off of the internet when I googled boutoneer ideas. I think the peacock with the puple is too cute.





This is obviously not exactly what we'll do, but these are sources of inspiration to me. :)

As I search and search... Here is the handy list of questions I came up with.

This is what I emailed her this morning:

Thank you for visiting with me yesterday. When all is said and done, we would like to have EVERYTHING for the reception (incl. tax and gratuities cost less than $XXXXX). Like you said, when looking over the banquet packet, I did get quickly intimidated and was concerned that we may not be able to stay within our allotted budget for the day. I did, however, see an entrée that was priced at $XX.XX and included a starch and a veggie, cake cutting, coffee & tea service as well as appetizer. Is that the one that you were talking about? That would bring us to $XX,XXX before tax and service charges, correct?

Do you have the date available?

What kind of deposits are needed to reserve the space for that date/time?

What is the capacity of your room(s)? How would we configure the space?

What is the “cake cutting fee”?

4. Do you provide tasting consultations/food tastings?
5. Is there a fee for such tastings?
6. What is the staff to guest ratio?
7. What is the staff dress code? Formal or casual?
8. If buffet style is offered, are servers provided or will it be self-serve?
9. Is there an extra charge for buffet servers? If so, how much?
10. When will the staff clean up the buffet line?
11. Is there an extra charge for bartenders? If so, how much?
12. Who is supplying the liquor, water, ice, etc.?
13. What is the charge for sodas/water/tea? Cash bar?
14. Is there security needed? Do you provide or do we need to?
15. Do you provide the wedding cake, or should I hire an outside baker?
16. If you provide the cake, is there an extra charge? If so, how much?
17. Is the champagne toasting service included or is that an extra charge? If an extra charge, how much?
18. Does the headcount include wedding professionals at the event (photographers, DJs, etc.)?
19. Are there special prices for feeding our DJ, band, photographer and other wedding professionals?
20. Are there special prices for children? (discounts?)
21. Is there a dance floor and, if so, how many people can it handle? Does it cost extra?
22. May our DJ or other professional(s) have access to your electrical outlets? Are there enough?
23. When is the final headcount due?
24. May I make partial payments?
25. When is the final payment due?
26. Is gratuity included in the price?
27. If not, what is the percentage of the service charge?
28. What percentage are the taxes?
29. What is the overtime charge?
30. Is the set-up and clean up included in the final price?
31. Do you provide linens, tables, chairs, china, glassware, silverware, serving accessories, etc.?  Can you send me pictures?
32. What equipment do you provide with the package?
33. Do you have Audio/Visual Equipment? What is the fee?
34. Do you provide rentals, or are they from another company?
35. Is there adequate parking?
36. Is there a charge for parking? If so, how much?
37. Do you offer valet parking? If so, how much?
38. Do you allow outside Valet companies?
39. Is there a coat checkroom? Is staff available for the room?
    If so, what are the fees associated with that service if not already included in the basic charge?
40. Are there any additional charges not mentioned?
41. Do you provide a written contract and guarantee?
42. What are the refunds/cancellation terms?
43. Do the bride and groom receive a bridal suite included in the package? Yes.
44. Are discounts available to our guests for their accommodations? If so, how much is the discount and/or how much are the rooms? $XXX/night as discussed?
45. How many hours will we have the room? Beginning time/end time?
46. How long before the event can we have access to the room so that we may prepare the room?
47. Are there any other events taking place at the same time as ours?
48. Our colors are black and white and tiffany blue. What colors are your linens?

 I hope my little list helps you...


Have a great day friends,
J

How we met

Adam and I met on October 10, 2010.


We were introduced by a friend named Match.com. Neither of us had known match very long, so being introduced to each other was a little bit awkward at first. And, I think we both thought we were each a little too good to be true.


I told him everything, and he told me everything. We vowed 100% honesty from the very beginning.


With my just having gone through a very rough two years with my son being born extremely prematurely at 30.5 weeks and having been very ill and Adam just having gone through a completely earth-shattering divorce, I don't know that either of us were prepared for what Match said when we both logged on that morning. I pulled up my matches and it said that "Fozzy Bear" was a 100% Match. So, I went out on a limb and sent him an email, "100% match? How do they know that?" and his response was clever so we began to correspond.


I told him my whole story. About how I had been divorced from my daughter's dad for five years until I met Aiden's dad and became engaged in '08, but he left three days before the wedding. I told him how Aiden had fought for his life in the NICU for 32 days before being sent home on oxygen only to have repeated illnesses and being diagnosed with two life-long disorders. Adam didn't bat an eye, but rather wanted to know MORE. He said that he thought I might be trying to get rid of him. Obviously, I wanted to weed out people who thought the facts of my life might be too much for them, but Adam wasn't deterred. He really wanted to get to know me better.


Adam told me about how he and his wife had divorced after 15 years of marriage and how their four beautiful children were still adjusting to life with two different households. I wasn't deterred either. There was just something about his smile that captured my interest. Emails quickly moved on to phone conversations and phone conversations moved onto a face-to-face meeting. Our first date was at Perry's Steakhouse in Katy. It was so romantic, I don't think I will ever forget that night.


Several months into our relationship, we introduced all the kids to one another. By that time we were both certain that an marriage was imminent and we wanted to give the children an opportunity to know each other better. 


Another wrench in the story is that in January 2011, Sophie was diagnosed with Histiocytosis (a rare white blood disorder) that's treated at the cancer center. She has six more months of initial treatment (monthly - and then we go to every three months). Adam's love and support through her illness and with Aiden's ongoing issues have meant the world to me. I have never known love like this... We have spent the last 8 months getting to know each other when he proposed on a trip to Vegas. We are going to have at least a year engagement so that Sophie can finish her treatment, and all six of our children can adjust to the idea of blending our families.

I love him so much, and I know he loves me too. Our future is so bright and our wedding will be beautiful.


Please stay tuned for more!

Jodi

A crowded room

Sophie is in having her MRI now. They are checking her thyroid and pituitary function for something called Diabetes Insipidous. DI is not Sugar Diabetes but is water diabetes and is a side effect of Histiocytosis. I pray she doesn't have it, but they're going to check. They are also checking her tumor to see if it is shrinking. I'm praying that is the case and nothing else is going on... As I sit, I am pondering...

I am a part of a new community of Histiocytosis and cancer parents I can't help but flash in my head the men, women and children we have seen on our many visits to the cancer center.

We have seen parents wrought with worry and concern, siblings bored out of their minds, but you can see their concern too. I walk by them, with their different electronic devices and I pray silently to myself that something would ease their pain.

As I sit in this crowded room, a mom sits with her eight year-old son peering over her shoulder at her iPad. Next to her sits a man who appears to have cried a lot today. His face is red, and he keeps getting up to pace the room.

Next to them, a father and his son sit with their Astros shirts on. They laugh and look over to the TV that's playing an old movie about a dog with a very solemn soundtrack. Further around the corner lay two brothers with their mom texting anxiously.

Then the doctor came out to report on their child's heart. This is the dad who looked like he was crying and the iPad mom and big brother. Now I know why they looked so sad. Mom has a stoic expression.... And tries to smile in spite of the news she just got. Inoperable isn't a good thing to hear. She tells her son that he can go stay with Grammy. He hugs her tight and just says, "I just want to be with you and Dad" and he starts to cry.

Every family has a story. Before you judge people for wearing the wrong thing, having hair that's a mess... or something else... Just please remember that they are probably going through something heavy too.

In this crowded room...

God bless dear ones,
J

Sent from my iPhone

We are SO HAPPY! Katy Magazine has published Sophie's story!!!

http://www.katymagazine.com/articles/2011/summer/Katy-Texas-My-Story-Helping-Sophie-Heal-Katy-TX.pdf

 

My daughter was diagnosed at age 9 with LCH. she lives in fear of this terrible disease every day, thou so far (luckily) it has only caused her to have one surgery to remove a tumor that had eaten through a 3cm hole in her skull. Now the doctor suspects pituitary involvement, and has ordered an MRI which will be done tomorrow. Tons of testing has been done on her, I know she feels like a pin cushion!  MUCH RESEARCH is needed, and the medical community needs to be EDUCATED about Histiocytosis! To many the disease is fatal, but to us, it is terminal. She will live in fear of another flare up for the rest of her little life. PLEASE HELP however you are able!

Golliath

It's so hard not to let worry creep in an paralyze you. Sophie's bump was there originally for three months before we had the first curetage. I pray that it's not growing in size, but rather the swelling and new margins that are there, are just the skull healing from underneath. This thing eats away at her SKULL, people. And it's kind of freaking me out! She's got a 3cm hole in her head and I pray that it's not growing, even though I can feel it and it's margins with my hands and it's about 3cm in width. It used to be a little bump (aka. nodule) that the MRI showed was 1cm and may even be showing signs of self-healing during her last scans in April. Why and how could this disease come back so quickly? It's mind boggling. It's only been a few months since her last scans!!

Please don't misunderstand me, I know God's going to see us through this, just like He has so many times before and I don't doubt him for a second. But, it's gonna be tough if they look us in the eye and tell us she has to have chemo. Very hard... I have read the journeys of many histio warriors and ^^angels^^ who have had to endure chemotherapy and bone marrow transplants and no one would EVER want that for their child EVER! This disease is relentless, non-discriminatory and chemo/steroids and BMT are really the only options if disease starts to run through the system.

And, to all the well-meaning brothers and sisters out there, please don't try to tell me that it's God's will that this is happening to my child. And, if I give you an odd look if you say that to me, please don't be offended...  I just don't believe that God would do this to ANY child. ANY CHILD... I think IT IS God's will that we handle it with HIS help. I think IT IS God's will that we be strong. And, I think IT IS God's will that we hold Him close, like the glue that keeps us all from falling apart. I think IT IS God's will that we pray... for the other histio and cancer warriors that we talk to in the forums and that we see at TXCCC every time we go. I think we should pray for healing, for comfort and for peace for all those affected. I love the Lord and I know he will see us through, with the strength of David vs. Golliath. I think this very well could be our Golliath. Maybe we should rename "Ouchie the Bump", Golliath. Maybe we shouldn't have ever given it a name in the first place, but then again denial is no place to be either.

Dear Lord,
Today I am praying for peace and calm for Sophie and myself. I pray for comfort for my fiance as he tries to offer emotional support over the miles. I also want to pray for my mom and dad as they await more test results. God WE KNOW you are here, and will never leave us. Please make it not hurt so bad sometimes, and please help us to find peace in knowing that you are here NOW!
Amen.

Have a good day friends,
J

This weekend, Sophie Update and Prayer for Adam!

This was an amazing weekend, filled with some of the best memories of my lifetime. My brother had just been ordained a United Methodist Pastor, so his church held a very nice reception for him. There was a pot-luck and the food and fellowship were amazing. Sophie was not able to attend, but Adam was able to join us. A beautiful letter was written by my mom and dad to my brother. It was read at the reception. Lots of fun memories were described and I think my brother was totally speechless.

We got in around four o’clock and settled in for the evening. It was a lot of driving for poor little Aiden, he was extremely tired and cranky, but after he got his bath, he laid down just fine. Sophie is the one I am sort of worried about today... When she got out of the shower, I examined her for any changes in “Ouchie the Bump”, well to my dismay the area where her bump is has changed. There used to be a “nodule” where the original tumor was, as well as a kind of sunken in part to her tumor injection site. Well, last night, it was more bulbous and curved outward instead of inward. I am hoping and praying that it’s nothing because that would mean chemo… I have emailed and called her doctor at the Cancer Center to see if we should go ahead and get her seen, or wait ‘til Mid-July when her scans are scheduled. Please keep the prayers coming!

In wedding news… The wedding planning is coming along nicely. We have decided on a venue and are looking forward to being married there. It’s tough to do a wedding on a super tight budget, but I am sure it will still be very nice. We have been hunting for a reception venue and I’m sure we’ll come up with a place soon, and it will be beautiful. We have decided that we need to get some things planned now, and set, so that if Sophie’s LCH gets worse, we have some things checked off the “to-do” list and can roll forward easily towards our wedding date without too much stress. God knows we have enough from other sources, lol…

This is a prayer for my fiance and I...

Dear Lord,

Grant that I and my future spouse may have a true

and understanding love for each other.

Grant that we may both

be filled with faith and trust.

Give us the grace to live

with each other in peace and harmony.

May we always bear with one another's weaknesses

and grow from each other's strengths.

help us to forgive one another's failings

and grant us patience, kindness, cheerfulness

and the spirit of placing the well-being

of one another ahead of self.

May the love that brought us together

grow and mature with each passing year.

Bring us both ever closer to You

through our love for each other.

Let our love grow to perfection.

Amen.

Good day friends,

J

O Happy Day!

Dear friends,

Well...

I have had the best few weeks of my life in recent memory. Let's see, I got ENGAGED to the love of my life.

 I was priveleged enough to get to witness my brother's ordination as a full elder in the United Methodist Church.

 I got to see my little girl graduate from the third grade.

And, let's see... We haven't had to go to the doctor or the emergency room ALL WEEK! I pray I don't jinx anything or anyone by saying that, but it's a truly blessed day when no one is in the hospital or dealing with major symptoms. And, last but certainly not least, I am getting to know my soon to be family better and I love them! They're all so great in their own way, and with distinct personalities... I am blessed to know them already!

Tonight I am giving thanks for the small things. I realize good and well that in an instant it could all change.

I spent some quality time with my little man this evening making funny faces. Priceless!!!

Goodnight friends,
J