We left Tuesday morning for our second opinion in Dallas with Dr. Pass. About 2 hours into our trip I realized that I had left all 8 of Jude's bottles in the fridge that I had prepared for the trip.
Normally this wouldn't be too big of a deal and we could just pull over somewhere and get some bottles but Jude is extremely particular about his bottles, will ONLY drink out of one kind, and you can only get them at Babies R Us.
We found a Babies R Us in Wichita Falls and were able to feed Jude. I said to Brad, "If this is the worst thing that happens on this trip, than we will be good." (Foreshadowing).
Later that night Brad and Andy went out to fire up the grill. But they found a bird's nest and a red wasp nest inside of it. It foiled our grilling plans but provided an opportunity for adventure for Brad and Andy. I had never seen red wasps before so I went to check it out...safely through the window. Then I remembered the fact that I am horribly freaked out by wasps nests.
I got all itchy and sweaty. But emboldened by the opportunity to video what had the potential to be a funny attempt by my husband and brother-in-law to defend us from the threat of the red wasps and maybe from the birds too, I stood my post with my camera ready to catch the action.
Armed with wasp killer and a shower curtain rod they found in the garage, they went to war. I videoed while my sister, nieces, and I watched from inside. (Brad seems to have a knack for killing things with poles. Weird.)
After I turned the camera off Brad picked up the wasp nest and headed towards me. Brad knows that I am deathly afraid of wasps nest (or things with little holes all over) so this was particularly ugly of him. To say that I lost it when I saw him headed towards me with the nest is a gross understatement. I panicked. Hard core. I screamed, threw my camera, shoved one of my nieces (and possibly my infant son) out of my way, ran out of the room, sat and the stairs and cried. Guess we know where I stand on "fight or flight". Thank heavens my sweet sister put Brad in his place and kept him from actually getting to me with the nest. And I always believe it is best to totally overreact when given the opportunity. Time to up the meds. Again.
Aside from the fact that we would be going to see a cancer specialist in the morning, the thought of that stupid wasp nest kept me up until 3:30 am. There is a good possibility that I need professional help.
Since Brad and I are unfamiliar with the Dallas area we left in plenty of time to find the hospital and the closest La Madeleine. We had breakfast there. Unfortunately Jude slept through it.
We got to the hospital early, filled out the paper work and waited.
And look whose sweet face popped in to see us! Bean!!!! He works across the street at Parkland and came to see us and sit in on Jude's appointment with us. It is always great to have another set of ears.
Jude got tired of waiting. Super boring.
So FINALLY Dr. Pass came in to talk to us. When I scheduled this appointment they asked me to overnight Jude's records to them (three weeks in advance) so that Dr. Pass would have time to review them. That led me to believe that she would have actually reviewed them BEFORE we showed up for our appointment. No such luck. Had she reviewed them ahead of time...like around the time they arrived 3 weeks prior, she would have seen that she had questions for Dr. Regueira that needed to be answered before we drove half-way across Texas to see her.
Looooong story short(er), she disagreed with Dr. Regueira on Jude's diagnosis and treatment. After the appointment and two very long phone calls with her later, she left me feeling extremely confused. Actually, she made me feel completely unimportant, stupid, frustrated, and like she thought we were a bunch of idiots from the sticks who have no idea what we are talking about or doing. She made me feel like we are stupid to be acting in our son's best interest in getting all of these discrepancies ironed out. After crying from frustration over her, I called Dr. Honey for help. She called Dr. Regueira and got clarification from him on the conversation he had with Dr. Pass. Basically it came down to a he-said-she-said argument. The LAST thing I wanted, aside from a worse diagnosis, was to leave Dallas with any unanswered questions. I left with much confusion, heartache, and many many more questions than we had going in. I don't know what we would do if we didn't have Dr. Honey to help us sort all of this mess out. And to have her on our side. Right now, I feel like she is the ONLY one acting in our best interest.
So where we are now is that we are waiting for Dr. Pass to get the pathology from Amarillo and Dr. Shimada so she can have her pathology team review it. She and Dr. Regueira are disagreeing on the staging and treatment for Jude. Ultimately, it comes down to the fact that we are patients of Dr. Regueira's and it seems to me that he is taking the more aggressive of approaches to treating Jude and that is what I prefer. I do not like how our hospital does his tests and I do not care for the way I was treated. Those are issues I will deal with later. I wish I had gone with my initial inclination in all of this and not gone to the trouble of seeking out a second opinion. If I had thought through things instead of reacting out of frustration with our hospital and Dr. R's nurse, I would have realized that any recurrence of a tumor will be evidenced by his lab work that we have done every month. Instead, I now feel like I have caused a lot of grief and frustration for Brad and I, for Dr. Honey, and for Dr. Regueira. That is the not what I wanted. Supposedly we will have a conference call this week with Dr. Regueira and Dr. Pass to get us all on the same page after she has her pathology team review Jude's biopsies. That should be a superfun conversation. This morning when Brad was talking to Dr. Pass for some clarification on some things, he asked for her to send us and Dr. Honey the protocol for Jude's treatement. She was very rude and adamantly refused to send it. She told him that it is too lengthy and there is no way he would be able to understand it. Right...because we are total hillbillies that can't read or write and ride our horses everywhere we go. Whatev.
So there ya go. That is the gist of our week. Nothing but wasted time, money, and energy. The bottom line is this...ALL Brad and I care about is making sure Jude is getting the BEST treatment available and that we are doing the right thing and not missing any thing since this is such a rapidly growing cancer. That is all we care about...our son. So Dr. Pass can think I am a total idiot and treat us like dummies and that is just fine. She showed what kind of doctor she is and that is all I need to know.
She did point out some valid concerns with the way our hospital handles Jude scans and I am at least thankful for that. I will address that in September when we go for our next round of scans. She also explained the HVA/VMA levels to me. Those are the only 2 positive things I have to say about our appointment with her.
After our appointment we had lunch with Bean at a yummy pizza place in uptown Dallas called Coal Vines. As we were walking in (and pushing our huge stroller with Jude), Bean says to me, "I am pretty sure we are going to be the only people in here with a baby." Super. Not to mention the fact that it is about 200 degrees outside and I was a hot and sweaty mess by the time we got there. Lovely. I definitely could tell this was not a baby-friendly place. But who cares?
After we dropped Bean off back at the hospital we went to the mall to kill some time until we heard back from Dr. Pass. (We were tentatively scheduled for a repeat bone marrow biopsy early the next morning but later cancelled). She finally called after she talked to Dr. Regueira while we were in Banana Republic and I went outside to talk to her. Basically she told me that Dr. Regueira had lied about things and everything we've thought for the last 3 months is not true and the protocol we've been following is incorrect. She left me totally confused and frustrated. She made me cry while sitting outside Banana Republic. Not cool.
We walked directly over to La Madeleine and had a coffee and piece of chocolate torte to make me feel better. Brad always knows just what to do! (Yes, La Madeleine twice in one day! Heaven!!!)
We left and started to head back towards Carrie's and stopped at a Costco on the way. We don't have a Costco out here so we stopped in with my sister's friend's Costco card. I was Kristin Archer for the day. When we walked in we saw these gigantic teddy bears and we grabbed one right up for Jamesie. So cute! We couldn't wait to give it to him. We finally left Dallas to head back to Carrie's at 5:30. No one told us that would not be a wise time to get on the road. We sat in traffic for an hour and a half.
Jude got hungry and started crying/screaming. I crawled in the back to feed him and got car sick and a major headache. The perfect end to a perfect day. Not s'much. By the time we got back to Carrie's all I wanted to do was take a bath and put my jammies on and go to bed. We had some big shopping plans for today but I totally bailed on her. I was not in a shopping mood. If you know me at all you know that I must have been really upset to cancel a shopping trip. Yesterday just took too much out of me and I hate the frustration and confusion I am feeling over all of this. So we left early to head back to Amarillo. All I wanted to do was see Jamesie and get back home and all snuggled down with my boy.
On our way home we stopped at Valley Pecans in Chillicothe, Texas at my sister's recommendation.
And boy are we glad we did! Aside from La Madeleine this is my favorite store we went into! What an adorable store and an adorable owner! If you are ever driving through the little town of Chillicothe, definitely stop in and pick up some of their delicious snacks or homemade fudge. This store was a real treat!
When we got home my PRECIOUS Mommy had gotten James all jammied up, pulled back our bed for us, had dinner waiting for us in the oven and dessert too. She also prepped our coffee for in the morning! What an Angel Mother I have!!!!!
Brad brought in the surprise for Jamesie.
He LOVES his new teddy bear!
A lot!
When we sat down to eat dinner, I put the bear in the seat next to James. He immediately grabbed his paw to pray. I looked up while Brad was praying and James had his head laid on the bear's arm. So cute!
I got in a little snuggle time with him too.
I missed my little Sunshine. I don't like being away from him.
He snuggled down in bed with his new friend.
And they slept happily ever after.
So there is our week so far. I will keep you posted on what the final decision is for Jude's staging and treatment. We are waiting for Dr. Regueira to review his records and for Dr. Pass to get the pathology. We should know by next week. Thank you if you prayed for us on this trip and for the 2nd opinion. Although things did not go as I wanted them to, they went the way the Lord allowed. And there is a reason for that so I will just be thankful and wait to see what it is. We are grateful that the discrepancy is between it being down-staged and not up-staged. Praise the Lord for that! Still...we want to know the facts and we want accurate information.
2 Corinthians 12:9-10-But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
Armed with wasp killer and a shower curtain rod they found in the garage, they went to war. I videoed while my sister, nieces, and I watched from inside. (Brad seems to have a knack for killing things with poles. Weird.)
Aside from the fact that we would be going to see a cancer specialist in the morning, the thought of that stupid wasp nest kept me up until 3:30 am. There is a good possibility that I need professional help.
Looooong story short(er), she disagreed with Dr. Regueira on Jude's diagnosis and treatment. After the appointment and two very long phone calls with her later, she left me feeling extremely confused. Actually, she made me feel completely unimportant, stupid, frustrated, and like she thought we were a bunch of idiots from the sticks who have no idea what we are talking about or doing. She made me feel like we are stupid to be acting in our son's best interest in getting all of these discrepancies ironed out. After crying from frustration over her, I called Dr. Honey for help. She called Dr. Regueira and got clarification from him on the conversation he had with Dr. Pass. Basically it came down to a he-said-she-said argument. The LAST thing I wanted, aside from a worse diagnosis, was to leave Dallas with any unanswered questions. I left with much confusion, heartache, and many many more questions than we had going in. I don't know what we would do if we didn't have Dr. Honey to help us sort all of this mess out. And to have her on our side. Right now, I feel like she is the ONLY one acting in our best interest.
So where we are now is that we are waiting for Dr. Pass to get the pathology from Amarillo and Dr. Shimada so she can have her pathology team review it. She and Dr. Regueira are disagreeing on the staging and treatment for Jude. Ultimately, it comes down to the fact that we are patients of Dr. Regueira's and it seems to me that he is taking the more aggressive of approaches to treating Jude and that is what I prefer. I do not like how our hospital does his tests and I do not care for the way I was treated. Those are issues I will deal with later. I wish I had gone with my initial inclination in all of this and not gone to the trouble of seeking out a second opinion. If I had thought through things instead of reacting out of frustration with our hospital and Dr. R's nurse, I would have realized that any recurrence of a tumor will be evidenced by his lab work that we have done every month. Instead, I now feel like I have caused a lot of grief and frustration for Brad and I, for Dr. Honey, and for Dr. Regueira. That is the not what I wanted. Supposedly we will have a conference call this week with Dr. Regueira and Dr. Pass to get us all on the same page after she has her pathology team review Jude's biopsies. That should be a superfun conversation. This morning when Brad was talking to Dr. Pass for some clarification on some things, he asked for her to send us and Dr. Honey the protocol for Jude's treatement. She was very rude and adamantly refused to send it. She told him that it is too lengthy and there is no way he would be able to understand it. Right...because we are total hillbillies that can't read or write and ride our horses everywhere we go. Whatev.
So there ya go. That is the gist of our week. Nothing but wasted time, money, and energy. The bottom line is this...ALL Brad and I care about is making sure Jude is getting the BEST treatment available and that we are doing the right thing and not missing any thing since this is such a rapidly growing cancer. That is all we care about...our son. So Dr. Pass can think I am a total idiot and treat us like dummies and that is just fine. She showed what kind of doctor she is and that is all I need to know.
She did point out some valid concerns with the way our hospital handles Jude scans and I am at least thankful for that. I will address that in September when we go for our next round of scans. She also explained the HVA/VMA levels to me. Those are the only 2 positive things I have to say about our appointment with her.
After our appointment we had lunch with Bean at a yummy pizza place in uptown Dallas called Coal Vines. As we were walking in (and pushing our huge stroller with Jude), Bean says to me, "I am pretty sure we are going to be the only people in here with a baby." Super. Not to mention the fact that it is about 200 degrees outside and I was a hot and sweaty mess by the time we got there. Lovely. I definitely could tell this was not a baby-friendly place. But who cares?
After we dropped Bean off back at the hospital we went to the mall to kill some time until we heard back from Dr. Pass. (We were tentatively scheduled for a repeat bone marrow biopsy early the next morning but later cancelled). She finally called after she talked to Dr. Regueira while we were in Banana Republic and I went outside to talk to her. Basically she told me that Dr. Regueira had lied about things and everything we've thought for the last 3 months is not true and the protocol we've been following is incorrect. She left me totally confused and frustrated. She made me cry while sitting outside Banana Republic. Not cool.
We walked directly over to La Madeleine and had a coffee and piece of chocolate torte to make me feel better. Brad always knows just what to do! (Yes, La Madeleine twice in one day! Heaven!!!)
We left and started to head back towards Carrie's and stopped at a Costco on the way. We don't have a Costco out here so we stopped in with my sister's friend's Costco card. I was Kristin Archer for the day. When we walked in we saw these gigantic teddy bears and we grabbed one right up for Jamesie. So cute! We couldn't wait to give it to him. We finally left Dallas to head back to Carrie's at 5:30. No one told us that would not be a wise time to get on the road. We sat in traffic for an hour and a half.
On our way home we stopped at Valley Pecans in Chillicothe, Texas at my sister's recommendation.
When we got home my PRECIOUS Mommy had gotten James all jammied up, pulled back our bed for us, had dinner waiting for us in the oven and dessert too. She also prepped our coffee for in the morning! What an Angel Mother I have!!!!!
Brad brought in the surprise for Jamesie.
He LOVES his new teddy bear!
I got in a little snuggle time with him too.
He snuggled down in bed with his new friend.
2 Corinthians 12:9-10-But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
Comments
*sigh* waiting....
The bear is HU-mongo! Wow!! BTW, I am soo glad that Brad was able to go with you this time. I am sure that was a HU-mongo blessing. :)