Post by: BenBow on November 15, 2012, 09:30:00 PM
(http://i122.photobucket.com/albums/o241/galnmax/LuccaE.jpg)
Post by: 4dogs on November 15, 2012, 09:45:00 PM
Post by: stringstretcher on November 16, 2012, 05:14:00 AM
Post by: b.glass on November 16, 2012, 07:17:00 AM
Post by: lunatic11 on November 16, 2012, 08:48:00 AM
Post by: BenBow on November 16, 2012, 09:10:00 AM
Post by: shick on November 16, 2012, 11:00:00 AM
Shick
Post by: zarch on November 16, 2012, 02:01:00 PM
Post by: jeanpaul3006 on November 16, 2012, 09:43:00 PM
Post by: jeanpaul3006 on November 16, 2012, 09:44:00 PM
Post by: Doc Nock on November 16, 2012, 10:10:00 PM
!["[dntthnk]"]("graemlins/dntthnk.gif" "\"\"")
:( Dear Dear Child and parents and grandparents...
My heart goes out to you all. Great thing is that infants and even children, they rest easier in God's hands than we do as we become more "adult".
Prayers that between God's intervention and the miracles of modern medicine, this can be prayed off this child without surgery, and if required, that it goes well and she lives a long and devoted life!
Keep the Son in your eyes, Galen.
Post by: zarch on November 17, 2012, 08:36:00 PM
Post by: zarch on November 17, 2012, 08:37:00 PM
Post by: BenBow on November 21, 2012, 09:18:00 AM
(http://i122.photobucket.com/albums/o241/galnmax/photo.jpg)
Post by: b.glass on November 21, 2012, 02:04:00 PM
Post by: Doc Nock on November 21, 2012, 02:54:00 PM
Looks a bit distended about the lower trunk, but what an adorable face and expression...
Lord, in Your MERCY... hear our prayers...
Post by: BenBow on November 21, 2012, 03:15:00 PM
Post by: Doc Nock on November 21, 2012, 07:20:00 PM
Prayers for the parents. God's got the child covered for sure.
Post by: Keefer on November 22, 2012, 06:39:00 AM
Post by: zarch on November 22, 2012, 10:08:00 AM
Post by: Barry Rowland on November 22, 2012, 08:00:00 PM
Post by: zarch on November 23, 2012, 07:39:00 PM
Post by: Alvey on November 23, 2012, 10:58:00 PM
Post by: GRAYBEARD on November 24, 2012, 02:36:00 PM
Post by: zarch on November 24, 2012, 03:04:00 PM
Post by: stickbowmaniac on November 24, 2012, 06:49:00 PM
Post by: Rookie@51 on November 24, 2012, 10:10:00 PM
Post by: monsterchelli on November 26, 2012, 09:45:00 PM
Post by: buckeye_hunter on November 29, 2012, 07:16:00 PM
Prayers sent from my home for you all.
-Charlie
Post by: zarch on November 30, 2012, 01:33:00 AM
Post by: BenBow on November 30, 2012, 09:12:00 AM
Post by: Doc Nock on November 30, 2012, 01:29:00 PM
Continued prayers asking for His Divine intervention to heal this child, according to His will....and for strength for the parents, family and friends to bond together and to forever ....
Keep the Son in their eyes.
Post by: Keefer on November 30, 2012, 03:32:00 PM
Post by: eddings220 on November 30, 2012, 11:19:00 PM
Post by: zarch on December 01, 2012, 09:58:00 PM
Post by: zarch on December 04, 2012, 01:25:00 AM
Post by: BenBow on December 04, 2012, 09:52:00 AM
Quote
Cancer is very aggressive. All that was discussed before is what it is.No cancer in bones only in that huge tumor that is in the liver. Not a lot of data on baby's this young it's rare. Extended painful care and Mary (Lucca's mother) to be gone weeks at a time. Not sure where we go from here.
Post by: 4dogs on December 04, 2012, 12:04:00 PM
Post by: Doc Nock on December 04, 2012, 08:50:00 PM
Liver tumor... bummer in spades! Poor li'l child...
Lord in Your Mercy...
Post by: b.glass on December 05, 2012, 07:22:00 AM
Post by: Oliverstacy on December 05, 2012, 11:43:00 AM
Josh
Post by: shick on December 06, 2012, 06:41:00 AM
Shick
Post by: zarch on December 06, 2012, 06:43:00 PM
Post by: monsterbuck on December 06, 2012, 06:57:00 PM
Post by: Cyclic-Rivers on December 08, 2012, 09:13:00 PM
Post by: buckeye_hunter on December 09, 2012, 07:52:00 PM
-Charlie
Post by: zarch on December 10, 2012, 02:34:00 AM
Post by: Keefer on December 10, 2012, 08:01:00 PM
Post by: zarch on December 13, 2012, 01:27:00 AM
Post by: bowslinger on December 13, 2012, 02:28:00 AM
Post by: Doc Nock on December 13, 2012, 09:06:00 AM
Post by: BenBow on December 13, 2012, 09:33:00 AM
Post by: amicus on December 13, 2012, 02:40:00 PM
Post by: MR BILL SHORTY on December 13, 2012, 06:36:00 PM
Post by: zarch on December 14, 2012, 01:47:00 AM
Post by: b.glass on December 14, 2012, 01:46:00 PM
Post by: Keefer on December 14, 2012, 02:20:00 PM
Keefers <><
Post by: BenBow on December 14, 2012, 03:10:00 PM
Quote
My pessimism paid off.....Lucca will get to home tonight. After her chemo she will receive a blood transfusion because her hemoglobin dropped some more but they feel good about her going home. Yay! She continues to be in good spirits for the most part just slightly more fussy and tired but that's to be expected, right?!
When I spoke with the Dr. Today she told me the plan for her next round of chemo. It will start around the 31st or 1st. We will be at Riley for that round. She will receive the same two chemo medicines over five days again. While we are there she will have a small surgery to put in a double central line which should result in no more all day poking sessions for her. Which will be great. The negative of this will be her having to be put under. I hate that part.
After that week we will get to go home as long as she responds well to the chemo again. Once home her white blood cell count will be monitored closely and once they are at a certain point we will return to Riley for her stem cell collection. What will happen is she will be connected to two IV's and in one line they will take blood out and filter out the white blood cells and give her back the rest of the blood through the other line. These cells will be saved and then when needed given back to her. She will be receiving shots to help her bone marrow produce more cells at a faster rate so that collecting them won't hurt her. This is the stem cell collection. Since we don't know when her counts will be where they need to be for this to happen there is no specific date on when it will take place, just some time after the next round of chemo when her body is ready. After that her counts will again be monitored and when they are where they need to be she will get her third round of chemo. When we are down at Riley during this time they are also planning to do more scans to see what that tumor looks like at this point so they can decide about surgery.
So that is the next month in a half in a nut shell for us. Of course things can change but at least we have an idea of what is to come......and today we get to get out of here!
Post by: b.glass on December 14, 2012, 04:22:00 PM
Post by: zarch on December 15, 2012, 12:35:00 AM
Post by: ti-guy on December 15, 2012, 12:45:00 AM
Post by: Doc Nock on December 15, 2012, 09:03:00 AM
Hope springs eternal for Believers and it would appear that her Mom has that eternal Hope we all have in our Lord.
Prayers continue for a miracle thru His Healing Hands to come to li'l Elizabeth in the weeks ahead.
Lord in your Mercy...
Post by: BenBow on December 18, 2012, 09:11:00 AM
Lucca and her sister Sofie
(http://i122.photobucket.com/albums/o241/galnmax/girls.jpg)
Post by: Doc Nock on December 18, 2012, 01:03:00 PM
At least she's still up and smiling. Terrible thing for a child to have to endure! Cancer of this magnitude at such a tender age.
Prayers for her and her parents...
Lord in your Mercy, hear our prayers...
Post by: zarch on December 20, 2012, 02:30:00 AM
Post by: Flt Rck Shtr on December 22, 2012, 06:32:00 AM
Post by: b.glass on December 24, 2012, 07:51:00 AM
Post by: Keefer on December 24, 2012, 09:54:00 AM
Post by: Keefer on December 25, 2012, 09:20:00 AM
Post by: zarch on December 25, 2012, 09:43:00 AM
Post by: 4dogs on December 25, 2012, 12:03:00 PM
Post by: GRAYBEARD on December 26, 2012, 04:09:00 PM
Post by: BenBow on December 27, 2012, 09:26:00 AM
Post by: Doc Nock on December 27, 2012, 01:56:00 PM
Prayers continue, Galen. His will is perfect, just not always what we want or would like. Lord in your Mercy...
Post by: zarch on December 31, 2012, 12:58:00 AM
Post by: bowslinger on December 31, 2012, 01:36:00 AM
Post by: BenBow on December 31, 2012, 01:01:00 PM
Post by: zarch on December 31, 2012, 01:34:00 PM
Post by: So-Mo Archer on December 31, 2012, 02:27:00 PM
Please keep us posted.
Post by: bowslinger on December 31, 2012, 11:39:00 PM
Post by: zarch on January 01, 2013, 03:21:00 AM
Post by: zarch on January 04, 2013, 02:45:00 AM
Post by: Keefer on January 04, 2013, 04:53:00 AM
Post by: Doc Nock on January 04, 2013, 08:09:00 AM
May God's love surmount those trials and provide peace beyond human understanding.
I know, Galen, that your chemo was rough on you... and hammered you hard...so special prayers for the wee one to endure and surmount!
Post by: LouCompton on January 04, 2013, 10:20:00 PM
Post by: zarch on January 04, 2013, 10:31:00 PM
Post by: BRITTMAN on January 06, 2013, 07:00:00 PM
Post by: zarch on January 09, 2013, 10:44:00 PM
Post by: BenBow on January 10, 2013, 08:55:00 AM
Quote
Last night Lucca just wasn't comfortable. We were up a lot through the night. By morning she seemed warm so I took her temp. It was 99.5 the magic number to head to the hospital is 100.4. I ended up feeding her and the she got sick. So I decided to call the on call doctor. We decided to watch her through out the day and keep in touch. After a day of being fussy, fever rising, and getting sick again we headed to the hospital. The labs done earlier in the day showed a low white blood count which is normal at this point after chemo and the rest of the counts were low but nothing that needed a transfusion. Her temperature kept rising while we were at the hospital. Once it reached above 100.4 they admitted us. She has had several crying episodes the longest one lasting an hour. She hasn't ate anything. They are not sure what is wrong except she has an infection. They are checking for RSV, and anything else. We wont know till the morning. If they can't find anything they will do a spinal tap for meningitis. Hopefully we don't have to do that.
Post by: GRAYBEARD on January 10, 2013, 02:49:00 PM
My heart goes out to you all.
Post by: GodsApocalypse on January 10, 2013, 09:29:00 PM
Post by: zarch on January 11, 2013, 01:58:00 AM
Post by: Froggy on January 11, 2013, 08:52:00 AM
God bless
Lanier
Post by: zarch on January 12, 2013, 01:30:00 AM
Post by: So-Mo Archer on January 12, 2013, 08:53:00 PM
Post by: zarch on January 13, 2013, 05:01:00 AM
Post by: BenBow on January 14, 2013, 07:40:00 AM
Post by: Doc Nock on January 14, 2013, 08:39:00 AM
Quote
Originally posted by BenBow:I hope that means soemthing good is afoot!? :pray:
Have to edit the picture
Post by: BenBow on January 14, 2013, 08:48:00 AM
(http://i122.photobucket.com/albums/o241/galnmax/Sisters.jpg)
Post by: Doc Nock on January 14, 2013, 01:56:00 PM
Prayers continue...
Post by: zarch on January 15, 2013, 01:41:00 AM
Post by: GRINCH on January 15, 2013, 09:39:00 AM
Post by: b.glass on January 15, 2013, 01:29:00 PM
Post by: zarch on January 15, 2013, 06:03:00 PM
Post by: bowslinger on January 16, 2013, 01:42:00 AM
Post by: BenBow on January 19, 2013, 07:27:00 AM
Quote
Lucca is doing well. The home care nurse came out on Thursday to draw blood. Memorial always calls me to tell me the results. They told me her counts are on the rise and they feel that if they are good on Monday when we go to our appointment they will admit her and she will receive her third round of chemo as scheduled. I am a little disappointed. I was hoping that I could put this one off a little longer. We haven't even been home a week from the hospital and I dread going. And I don't want her to have this round. It is more potent. It will damage her hearing and I am not ready. Everything till this has been not so bad but I have this bad gut feeling that everything after this will be intense, more stressful, and so hard. I don't want to do it. I wish I could book us a flight to Hawaii and take our chances. It's stupid I know. I just don't want to do this. I hate it. I have a relatively happy baby right now and I am not confidant that it will continue. And I don't want her to have hearing aids and microphones for her teachers to talk in to so she can hear them. And maybe we will luck out and none of that will happen but I am not confidant and it's scary.
Post by: Doc Nock on January 19, 2013, 09:00:00 AM
Prayers will continue for this wee one as she begins more chemo... I can truly understand that mother's fear, even never having been there. Whether to enjoy the child and let God drive the bus, or succumb to modern medicine and all it can do... and risk the side effects.
May God grant these parents peace of mind, a sense of calm and discernment without later guilt or qualms for whatever choice is made.
His Will will be done with Elizabeth, but the parents are the ones who will feel the weight of what decision is made.
Lord, in Your Mercy...
Post by: zarch on January 19, 2013, 10:20:00 AM
Post by: 4dogs on January 19, 2013, 11:13:00 AM
Post by: zarch on January 20, 2013, 12:23:00 PM
Post by: bowslinger on January 22, 2013, 02:06:00 AM
Post by: b.glass on January 28, 2013, 12:38:00 PM
Post by: GRINCH on January 29, 2013, 10:13:00 AM
Post by: Doc Nock on January 29, 2013, 12:51:00 PM
Post by: GRAYBEARD on January 30, 2013, 08:14:00 AM
We are all praying for this little doll and her family.
Post by: BenBow on February 04, 2013, 10:34:00 PM
Quote
The day started with little sleep. Once arriving here Lucca received a blood transfusion and a platelet transfusion. Her vitals were also being monitored closely because of the transfusions. After midnight she wasn't allowed to eat. Around 3:00 she had a crying fit and was hungry. It lasted about a half hour or so. Finally she settled down but she had to be held by me all night. Verlin and I tried to switch once but she got really upset. So he tried to sleep while I held her in the chair. About 5:30 am I couldn't take it anymore and asked if we could try to switch again. Thankfully she let it happen. Laying down felt so good. At 7:15 am they let us know she was headed for pre-op. she was awake and happy. I was surprised since she hadn't eaten but I was thankful. Once down in pre-op she fell apart. It got kind of crazy. We still didn't know the plan and hadn't seen anyone. The surgeon came to see us and explained the procedure. They planned to put a catheter in her groin. He discussed the risks and then said they would get started soon. The poor baby was screaming through everything so it was hard to have much of a conversation with him. Then anesthesia came explaining their part. The surgeon returned to say they needed to wait for her platelet count to come back and it may be an hour. Seriously an hour is a really long time when your baby is starving and can't eat. We waited and they had told us the harvest team would be in to discuss things with us but they never came. Then the anesthesia team came in and took her away. It was a little unsettleing. Sending your baby off when you don't even know the plan.....like how long the surgery is, will she be harvested for sure, where do we wait??? That was stressful and upsetting. Communication was definitely lost today and this whole weekend really. She made it through surgery successfully but her vein was torn by the catheter and they had to repair it. My understanding is this catheter is large, like as big as her vein, and it is in the largest vein running through her leg. The surgeon ( who has been awesome ) said she is little and that is why it happened. He repaired the damage but decided he wants to be the one to take it out. He feels like there are too many risks not to do it in the OR under a surgeons care. So that means tomorrow morning she will go back to surgery to have it removed. I pray there are no complications but I worry that because it has already been torn they may run into problems. We also have had some problems with it bleeding for us. It was saturated and seeping earlier. It seems to be fine for now but they are watching it closely. It is obviously painful for her too. She cried and cried for awhile and she is sensitive to the touch. :( She will be receiving two transfusions tonight one for blood and one for platlets. So that will mean another all nighter for Verlin and I. The same thing happened last night and I am pretty sure we each got two or three hours of sleep if we were lucky. We have the Ronald McDonald room and used it to shower. Thank goodness for that because in ICU it's a community bathroom....gross! We don't feel comfortable leaving each other alone with her for a night. She just needs too much and it's too hard for one person. We will be exhausted when we return home but this is what she needs and that's what is most important to us. We pray tomorrows surgery goes well and we are able to go home and get this baby and ourselves some rest.
Post by: zarch on February 05, 2013, 01:36:00 AM
Post by: Doc Nock on February 05, 2013, 09:31:00 AM
Lord in your Mercy... hear our prayers.
Post by: GRINCH on February 05, 2013, 09:44:00 AM
Post by: 4dogs on February 05, 2013, 10:12:00 AM
Post by: BenBow on February 05, 2013, 07:38:00 PM
Quote
Lucca's second surgery was successful. We went back to the OR about 10:30 am and she went back to surgery about 11:30 am. Her surgery was about an hour. The surgeon said she dis very well and he was glad he removed the line. He said it was as he had expected it to be so he was glad he sewed it up. When she came out she was a little groggy but mostly hungry. She ate 6 oz of pedialyte and once back in our room 5 oz of formula. That is a lot for her. Then she was happy. She looks good. I think she looks tired and her eyes look puffy to me but if i had been through what she has im sure i would look a lot worse. Her leg is swollen nd i just need to keep am eye on it. The surgeon would like for me to bring her back in two weeks to look at it. But once he realized where we lived he said he would see what he could do so that is to be determined. I never really said how well her harvest went yesterday but it was very successful. They were able to get enough cells for six transplants. So hopefully way more than we will ever need.
I dont really know much about what happens next. What i do know is she starts round four of chemo on monday. I also know the transplant will not happen for awhile. I believe the dr. Said it takes place six to seven months in. That wouls be about June for us. That will take place in chicago amd recovery time is about 6-8 week in hospital.
But today Lucca is ok and on the mend amd we are headed home ! Thank you for your prayers and good vibes. They help a lot. Big hugs to all of you!
Post by: Phrogdrvr on February 05, 2013, 08:20:00 PM
Post by: Doc Nock on February 05, 2013, 09:27:00 PM
What that tiny child is going thru and the heart ache of her parents... gracious!
Continued prayers for the chemo and all to go well and all the rest of whatever is planned to being this baby girl to full restoration...
Lord in your mercy...
Post by: Mooreski on February 06, 2013, 08:59:00 AM
Prayers for God to take this child in his hands and completely heal from head to toe. AMEN
Post by: zarch on February 07, 2013, 08:55:00 AM
Post by: GRAYBEARD on February 08, 2013, 06:45:00 PM
Post by: mtnman1945 on February 12, 2013, 10:44:00 PM
Post by: bowslinger on February 13, 2013, 01:25:00 AM
Post by: b.glass on February 13, 2013, 07:15:00 AM
Post by: BenBow on February 14, 2013, 02:27:00 PM
(http://images.imagelinky.com/1360869873.jpg)
Post by: Doc Nock on February 14, 2013, 08:01:00 PM
May His will be for her to be victorious and spread His love the rest of her life!
Post by: zarch on February 16, 2013, 10:53:00 PM
Post by: LouCompton on February 17, 2013, 12:57:00 AM
Post by: zarch on February 21, 2013, 01:51:00 AM
Post by: BenBow on February 21, 2013, 01:51:00 PM
Quote
Poor Lucca....she is really struggling. She is very uncomfortable. Around midnight she started running a fever. The dr. came in to examine and they drew a blood culture and started her on antibiotics. Unfortunately nothing seems to be making her better at this point. The X-ray yesterday didn't show anything abnormal. The only thing we do know for sure is she does not have the bacteria infection they refer to as c-diff. Which is good. The blood culture takes 24 hours to grow, so we won't have answer about that till probably tomorrow. Dr Hertling (the other oncology dr) talked to me about possibly doing other imaging (an ultrasound or ct). To see if they can pin point the problem. She spoke of possibly putting her on a morphine drip but she is a little uneasy about doing that when they really don't know what is wrong with her, yet at the same time she wants her to be comfortable. So we will see what they decide. I feel so bad for her it's terrible. I can't set her down at all. She just cries and screams. So I hold her till I'm about to pee my pants and then I lay her down while she screams it out. I had to do the same this morning while I quick got dressed and brushed my teeth. I feel bad but I have to brush my teeth. I am sure if our favorite nurse has time today she will come by and hold her for me while I take a little break and eat something. Lucca is comfortable with her so that helps. She knows her. Hopefully we can find out soon what is wrong and make her better. I will keep you all posted.
Post by: 4dogs on February 21, 2013, 04:13:00 PM
Post by: zarch on February 21, 2013, 06:23:00 PM
Post by: Doc Nock on February 21, 2013, 07:03:00 PM
Whatever is God's will is what will happen... our job is to pray for healing "according to His Will" and for peace for the baby and strength for the parents to trust implicitly in Him.
Lord in your mercy...
Post by: BenBow on February 22, 2013, 01:20:00 PM
"The CT provided some answers. Around 2:00 am we woke to change Lucca and her nurse had just administered an antibiotic. Verlin had been holding her (he was still here waiting for results). When I picked her up he noticed drops and a puddle on the floor. He went for the nurse and they came in. It looked like maybe her central line was backing up and blood was pouring out of the line. They quick clamped everything and looked for the problem but couldn't find anything. They decided it must have been bad tubing with the antibiotic. They switched everything out and it seemed to work fine, no blood. That was definitely scarey for a minute. The doctor came in after all of that to tell us what the CT showed. Her head was fine. But her intestines showed some colitis and inflammation. They decided to put her on another antibiotic and morphine for pain. It helped her sleep and rest for the night. Her blood cultures all came back negative. They are still waiting for a nasal swab to come back. That was just checking for any other viruses. She is still uncomfortable and in pain. She wants to be held and cuddled. Her white blood cell count is still zero. And she is still not eating. If she continues not eating on Monday they will give her different fluids with fats, and other nutrients. I do not foresee us leaving her any time soon. She just isn't making great progress. This was the first CT since the original one that took place at Riley. So of course everyone is curious about the tumor. Her is what we know. It is smaller. It does still invade the liver but it appears to be less. And there is something around the adrenal gland in a lymph nod. What we don't know is how much it has shrank and if the spot with the lymph nod is new or has been there. We don't know these things because Memorial doesnt have a copy of the original scan. So they are requesting that from Riley. Once they can compare images they should have a better idea of what's what. I feel like I have a copy so I'm going to have Verlin look and see if he can find it and bring it up. Obviously I am very curious. Hopefully we will know more soon and this baby will be better. It is only 10 days till we have to be back her for round five :( "
Post by: Doc Nock on February 22, 2013, 01:49:00 PM
I'm sure these parents know the % of risk involved and are as emotionally prepared as one can be about possibilities.
Prayers continue... somewhat heavy-hearted for the current news, but hope springs eternal and God has the final say!
Post by: zarch on February 23, 2013, 01:36:00 AM
Post by: GRINCH on February 23, 2013, 08:18:00 AM
Post by: Rookie@51 on February 23, 2013, 09:53:00 PM
Post by: bowslinger on February 24, 2013, 12:37:00 AM
Post by: BenBow on February 24, 2013, 11:56:00 AM
Post by: zarch on February 27, 2013, 01:42:00 AM
Post by: Doc Nock on February 27, 2013, 07:40:00 AM
Lord in your Mercy...
Post by: Danny Rowan on March 01, 2013, 11:19:00 AM
Post by: zarch on March 04, 2013, 05:45:00 PM
Post by: BenBow on March 05, 2013, 12:24:00 PM
Post by: 4dogs on March 05, 2013, 12:25:00 PM
Post by: zarch on March 05, 2013, 12:52:00 PM
Post by: b.glass on March 05, 2013, 02:11:00 PM
Post by: Keefer on March 05, 2013, 05:39:00 PM
Post by: MR BILL SHORTY on March 05, 2013, 11:11:00 PM
Post by: GRINCH on March 06, 2013, 09:36:00 AM
Post by: zarch on March 06, 2013, 07:20:00 PM
Post by: Cyclic-Rivers on March 07, 2013, 07:47:00 PM
Post by: zarch on March 08, 2013, 01:18:00 AM
Post by: zarch on March 11, 2013, 01:32:00 PM
Post by: BenBow on March 11, 2013, 03:00:00 PM
Post by: Doc Nock on March 11, 2013, 04:06:00 PM
Rough road for all, but Lord's been holding them close this far--- prayers continue for all to be strong and God's mercy to shower on them, one and all!
Post by: zarch on March 11, 2013, 04:31:00 PM
Post by: BenBow on March 20, 2013, 10:32:00 PM
Post by: zarch on March 20, 2013, 10:46:00 PM
Post by: 4dogs on March 20, 2013, 10:53:00 PM
Post by: Doc Nock on March 21, 2013, 07:46:00 AM
Post by: zarch on March 25, 2013, 03:50:00 AM
Post by: 4dogs on April 01, 2013, 02:29:00 PM
Post by: Keefer on April 02, 2013, 05:29:00 PM
Keefers <><
Post by: BenBow on April 03, 2013, 09:20:00 AM
Post by: 4dogs on April 03, 2013, 09:57:00 AM
Post by: Doc Nock on April 03, 2013, 01:59:00 PM
Thank you, Jesus!
Post by: b.glass on April 07, 2013, 05:14:00 PM
Post by: zarch on April 10, 2013, 01:40:00 AM
Post by: BenBow on April 12, 2013, 08:44:00 PM
"un. The better Lucca feels the less I look forward to surgery. I'm excited to get the cancer out but sad to start another chapter of intense treatment. After surgery will be round 6. It is undecided if it will take place in Chicago or at memorial. Then there will be a four week or so break before her transplant. The transplant is big and we will be in Chicago for about 2 months. After that she will get another four week break and then radiation. That will also take place in Chicago over four weeks and we will live in temporary housing and go to the hospital daily. So it's a lot. And it would just be easier to stay home and forget she has cancer but that's not an option. So we will keep pushing forward I guess. The weekend will be fun. I hope it doesn't end Thursday and surgery will be here before I know it. :( "
Post by: Doc Nock on April 12, 2013, 09:28:00 PM
Only by the Grace of God I assume...
Prayers continue... Such faith and perseverance.
Lord, in your Mercy...
Post by: zarch on April 12, 2013, 11:47:00 PM
Post by: BenBow on April 18, 2013, 09:06:00 PM
"Surgery went well today. They were able to remove the tumor and do it laposcopicly. The were able to biopsy three lesions, the others were too small and hard to get to. She is doing well but in pain. She cannot eat tonight. We are in the PICU. It was a really long day. We were here at 6am and finally saw her around 2pm. We didn't get out of recovery and into a room till after 6 pm because they were so busy. But we are settled now and just trying to hold her and rest. She did a great job. The surgeon said she thinks she will be able come home for her last round of chemo. That would be great but one day at a time. Tonight we will just try to comfort her and manage her pain."
Post by: 4dogs on April 18, 2013, 10:13:00 PM
Post by: Doc Nock on April 19, 2013, 10:09:00 AM
Continued prayers for all to end well for this li'l tigress.
Lord, In your Mercy....
Post by: zarch on April 21, 2013, 10:56:00 PM
Post by: Al Dente on April 22, 2013, 06:26:00 PM
Post by: zarch on April 29, 2013, 12:05:00 PM
Post by: BenBow on April 30, 2013, 08:52:00 AM
Post by: Doc Nock on April 30, 2013, 11:17:00 AM
Now...important stuff: Prayers for Lucca to not have the level of pain...how confused that poor baby must be to have to go thru all this... but then she's so young, she may not know much else given her condition.
Lord, hear our prayers and spare this child and heal her. Thank you, Lord, Amen!
Post by: JMG on May 01, 2013, 07:38:00 AM
Post by: BenBow on May 01, 2013, 09:57:00 AM
Lucca has had some tough and irritable moments. Monday night was long with little sleep. Yesterday had some good moments but she struggled a lot. She was just uncomfortable and didn't feel good. Last night she did ok but unfortunately between loud things happening outside the room and an IV pump that kept beeping I didn't get much sleep again. Lucca has also been an early riser this week waking up at 6:30 and 7 am. She hasn't vomited at all yet. She also has kept an appetite so those things are good. She is just fussy but who wouldn't be. I did get word on the biopsy pathology and the two leasions that had samples taken from them came back negative. So that's great. There are many more tiny ones that the surgeons could not get to because it was causing too much bleeding but that is great news. Dr. Morrison said that there is some debate right now between Lucca's Chicago team whether or not it will be in Lucca's best interest to radiate her liver during the transplant time. The doctors are concerned that it may cause too much trauma at this time to her liver. The chemo she will receive damages the liver and she has a lot going on yet in her liver. So this will probably not be decided right away but it is something that is on the table and being discussed. She would still receive radiation it would just happen at a later date. Until then we will finish this round up and go from there. Thank you for keeping Lucca in your thoughts and prayers.
Post by: Doc Nock on May 01, 2013, 12:22:00 PM
Can anyone reading that imagine all that happening to THEM, or to be the parent of a small child going thru that???!!! I cannot even begin to relate to all that! :(
There is that thread of hope in there amidst all the trial and suffering that is so good the parents can see and illuminate to focus on.
They walk in faith, obviously!
Prayers continue for Lucca and the parents and medical team!
Post by: BenBow on May 03, 2013, 09:37:00 AM
(http://images.imagelinky.com/1367588117.jpg)
Post by: 4dogs on May 03, 2013, 10:10:00 AM
Post by: Doc Nock on May 03, 2013, 11:45:00 AM
What a beautiful child...and to smile thru all that she's endured!!!
I hope our prayers have helped, but I'd have to say that my money is on those incredibly faithful parents and their faith walk!
An amazing story of faith in the face of unending adversity! I've been privileged and learned from them and their trails!
Post by: GRAYBEARD on May 04, 2013, 01:10:00 PM
Prayers of joy and thanks, as well as continued progress!
Post by: bowslinger on May 11, 2013, 12:37:00 AM
Post by: zarch on May 11, 2013, 11:49:00 PM
Post by: BenBow on May 15, 2013, 11:51:00 PM
'It will be hard. Lucca will undergo four days of high doses of chemotherapy. Two of the medicines will be new the other two she has had before. She will be very sick by day 7 or so once the medicines have taken over and killed all of her cells. She may need to be intabated if the mucucitis gets too bad. She will struggle, there is no doubt. She will have fevers and be on antibiotics and may need another feeding tube. But if she can be strong enough she will be ok. If she can't and it gets the best of her we will lose her, and that is a reality. Not me feeling sorry for myself. I have accepted this. And I really think that all of you who are close to me should too. This is real. And I'm not trying to be a "Debbie Downer" but I don't want the reality of the seriousness of what is taking place to be dismissed. And I know all of you understand but I just don't feel comfortable dismissing the fact that she could die. '
Post by: Doc Nock on May 16, 2013, 07:45:00 AM
Just because Lucca toughed thru the other stuff doesn't mean, as her mother says, that she will come thru this.
Lucca will be fine either way...with loving parents here or her Father in Heaven--- but my heart goes out to these courageous parents.
Lord, in Your awesome Mercy, if it be your will, spare this child that she may witness to your Love. Amen.
Post by: 4dogs on May 16, 2013, 08:41:00 AM
Post by: zarch on May 16, 2013, 11:29:00 PM
Post by: Keefer on May 18, 2013, 08:19:00 PM
God bless you little Lucca we love you!
Keefers <><
Post by: halfseminole on May 19, 2013, 01:26:00 AM
Post by: Doc Nock on May 19, 2013, 08:05:00 AM
Prayers for peace for Lucca's family as they watch their child struggle and for you, Ed, and your family as you continue to heal!
Post by: JEFF B on May 19, 2013, 04:14:00 PM
Post by: DennyK on May 21, 2013, 07:08:00 PM
Post by: BenBow on May 27, 2013, 01:45:00 PM
Lucca is going through the side effects of the heavy chemo she received. They will soon start the infusion of the stem cells they previously harvested from her. They will be in the hospital for 3-5 more weeks as they watch for any negitive reactions and to be sure she is healthy enough to leave. Half way there on this tough leg. Praise God and thank you prayer warriors!
Post by: Doc Nock on May 27, 2013, 02:59:00 PM
I'm still overwhelmed what it must take for parents to watch such a wee one go thru all this, knowing it may still not work...
Prayers for full healing and total restoration for the wee one to be a 'Chosen One' to follow His lead for her life
Post by: BenBow on May 28, 2013, 08:53:00 AM
"Today was a little tough for Lucca. She had more vomiting and was exhausted. She slept on and off all day. She is miserable. The morphine drip helps manage her pain so she isn't whimpering or anything you can just tell when you look at her, there are no Lucca smiles right now. Her eyes look sad and tired. She vomitted a bright green color today. The nurse said it was probably stomach lining or stomach stuff. The chemo and mucositis break down the lining in your stomach. You could tell it was painful for her. it wasn't a lot but it was uncomfortable for her. Not that vomiting is ever a pleasant experience. We just spent the day holding her and trying to make her feel comfortable."
Post by: Doc Nock on May 28, 2013, 10:36:00 AM
Faith that God helps those who are so small live by trust and not question like we older ones often do...
Prayers that this horrific treatment regimen will run it's course, do it's desired work and Lucca can come thru this whole, well, and smiling once again.
Prayers for these courageous parents!
Post by: Cyclic-Rivers on May 28, 2013, 05:36:00 PM
Post by: Shortlongbow on May 28, 2013, 09:42:00 PM
Post by: Rookie@51 on May 28, 2013, 09:52:00 PM
Post by: BenBow on May 29, 2013, 05:19:00 PM
"Last night and today have been very difficult for Lucca. She has been running high fevers. Her heart rate was accelerated, she has blisters/sores on her lip and inside her mouth (mucacitis), she drools and just can't seem to get comfortable. Last night and today she would just tremble and shake as I held her. It's awful. I didn't sleep at all. I was really worried about her. She also looked as if she was turning blue and purple on her hands and her face looked really pale almost gray. When the transplant team arrived I told them my concerns. They examined her closely and said this is pretty normal of what happens. They told me the mucacitis will get worse. She may drool blood and have more sores and blisters. It's a horrible side effect for sure. I'm not sure I can handle having her in so much pain, as if I have a choice. The stem cells that were given today went fine. She did not have a reaction at all. The nurse said this is the only transplant she has been in where the child didn't react. The smell is gross though. I have never been a fan of creamed corn and I surely won't be now. They upped her morphine so I hope that will help her feel better. And her heart rate has come down a lot which I am very glad about. I think it is really good Verlin and I are both here. I'm not sure I could keep doing this alone. I am not looking forward to him having to leave. I hope she is a lot better by next Wednesday."
Post by: Doc Nock on May 30, 2013, 08:36:00 AM
Only thru Faith and Your Holy enduring love, can this family hold together and Lucca make it thru.
We ask in your Son's name, Lord, for healing for this child and peace for her parents in this great hour of need. They have held strong in their faith, but now give them that peace that passes all understanding to continue to endure and Trust in your will and ways, Lord. Amen
Post by: JMG on May 30, 2013, 08:56:00 AM
Post by: MR BILL SHORTY on May 30, 2013, 11:55:00 PM
Post by: BenBow on May 31, 2013, 08:42:00 AM
"I have to retitle these entries because I can't keep the days straight. So maybe this way I can keep things together because they write the date on a dry erase board in our room, so that should help. You know how they say before you die your life flashes before your eyes? well that kind of happens too when your child is in a life threatening situation. The difference is their life flashes before you and you think about all the things you should have done better. Like not being so concerned about your house being cleaned and instead you should have played with them more. Or how selfish it was that you complained that your hips and body hurt from holding them all night because they were sick because now you would sit forever just holding them. Or wishing they would just go to sleep because you are so tired and now it doesnt matter, you would give anything for that time back. And then you think that it can't end now because there hasn't been enough time for them or for you together. Or for life. And then everything gets slow like in the movies and on TV like it's not really happening. We had a really difficult night and day with Lucca. Everything that I had been worried about yesterday intensified today. Her heart rate was higher and wouldn't settle down, her blood pressure started to get really low, her fevers stayed high and would not break, and she was shaking and moaning. I started to notice her belly looking distended and hard. Verlin noticed her feet looking blue and purple. By 2 pm the doctors started to become concerned as well. Before I knew it we were in the ICU. They had about 10 people drawing blood, starting antibiotics, checking pulses, charting, you name name it. There as a swarm. They gave her a few boluses of fluid, more blood, and more platelets. She had X-Rays and an ultrasound. The good news is no fluid in her lungs or VOD ( the liver clotting that can be a side effect). The bad news is she definitely has an infection. So now she is stable. She still has high fevers, mucacitis, an elevated heart rate, and shakes from time to time. She also has a distended belly they believe is due to the mucacitis and the bowel being swollen. The intestine lining is most likely coming off which is swelling her belly and bowel. This should regress in a few days or so once her neutrophils ( white blood cells) start to return. Her blood pressure is stable. She is on two different medications to help regulate it for now. She needs to be monitored closely for awhile. The concern is the infection. There isn't much you can do. She is on a number of antibiotics and we just have to hope that is enough to support her till her counts return. The soonest we would see any nuetraphils would be the beginning of next week. So this is a really crucial time for her and a scarey time for us. For awhile today I wasn't sure what would happen. I didn't know if she was going to be ok. I'm still not sure. And I feel like if she isn't ok will I have done enough for her? Will I have spent enough time enjoying her? Will I remember her giggle and her voice? I'm scared its not going to work out like I want it too and I will be left empty wishing I had done more."
Post by: GRAYBEARD on June 01, 2013, 11:51:00 AM
God's Peace to all who care for this family.
Post by: Doc Nock on June 02, 2013, 06:08:00 PM
I just cannot imagine. I pray for Lucca's healing, of course, but that this anguish of "what if" and "did I do enough" for those anguished parents is soon replaced with a peace from God where they know they've pleased Him with their devotion to one of His own wee ones!
Lesson for us all. Guilt is a easy trap and wasted emotion. We are human, and but for God's love and Grace, would seldom ever do anything RIGHT... His love is reflected in our Love for others.
Peace for them all. Healing for Lucca!
Lord in your Mercy
Post by: BenBow on June 03, 2013, 05:25:00 PM
"Lucca still remains in a lot of pain. Her belly has enlarged more and is tender to the touch. They believe this is all a result of the mucacitis and her bowel is inflamed. She has drk circles under her eyes because she isn't able to rest or sleep much. She is pooping straight blood and has a yellow drool coming out of her mouth. They did try a new pain med called duloted ( sp?). We were a little nervous for them to use it because the last time she received it at Riley she stopped breathing but it seems to have helped a little. But it's not enough.
My biggest apprehension and worry at this point is her pain. She can't rest, she looks gray, and it just awful. I was up with literally all night. She just couldn't sleep because she was in so much pain. It's frustrating because the transplant team tells us her pain should be managed she shouldn't have any yet the ICU seems really slow in changing things or upping her medicines to make her comfortable. And we are all exhausted. I just want her to be able to rest. I'm sure they are tired of me complaining about her pain but it really bothers me. Especially when the transplant team tells me it should be managed. I know this for sure if there is nothing else wrong and this is all due to the mucacitis then well this stuff is really viscous, way worse than I realized and never seems to end. And I think this is day 6 so she has maybe 4 more days of agony till it starts to get better. :( "
Post by: Cyclic-Rivers on June 03, 2013, 08:00:00 PM
Post by: Doc Nock on June 03, 2013, 10:22:00 PM
It is amazing what the human body, even one that small, can endure when God wills it to be.
Lord in your Mercy...
Post by: MR BILL SHORTY on June 04, 2013, 12:47:00 PM
Post by: Big Ed on June 07, 2013, 06:03:00 PM
Post by: zarch on June 07, 2013, 07:57:00 PM
Post by: 4dogs on June 08, 2013, 03:33:00 PM
Post by: BenBow on June 08, 2013, 05:20:00 PM
"Lucca is still struggling. Her belly is measuring 54 1/2 cm in diameter. That's the biggest it has ever been. She is in so much pain and is having a very difficult time breathing. Last night was awful. She could not get comfortable to sleep and her pain couldn't be managed. Her heart rate was rising and her blood pressure was low. It's really frustrating. They gave her lasix to try to get her to pee out the extra fluid but its not working that well. She is swollen all over and pale and gray. I think she is even turning a bit yellow. They just did an ultrasound. As much as I want it to show nothing I want it to show something so we can fix it. I hate seeing her suffer and not being able to do anything. And no one is sleeping. I know she is exhausted. The all nighters are killing everyone.
We have not had any bloody stool since yesterday. They have changed to a blackish green. I don't know if that's good or bad. They tell me her white blood cell count is still rising. It's not 1 yet but .09 or something. They continue to reassure me it will get better but it may get worse before it gets better. It just is really hard on everyone. I can't imagine her having to be in more pain. They talked yesterday about putting her on methadone. I immediately thought wow that's pretty hardcore. At this point I'm up for anything though just for her to be able to have some relief.
Verlin and I are completely exhausted. We have been up most of every night since we arrived in the ICU a week ago. It's been really hard. The little girl next door passed away yesterday. :( It was really sad to watch. When I returned from taking a shower her family was outside the hospital crying and outside her room crying. I wanted to start crying too. I can't completely understand how they feel but I think I have an idea. "
Post by: zarch on June 08, 2013, 05:32:00 PM
Post by: Doc Nock on June 08, 2013, 07:06:00 PM
Lord, In YOUR awesome Mercy...hear our prayers.
Post by: Big Ed on June 08, 2013, 08:33:00 PM
Post by: BenBow on June 12, 2013, 04:43:00 PM
(http://i122.photobucket.com/albums/o241/galnmax/image.jpg)
Post by: vintage-bears on June 12, 2013, 07:00:00 PM
I will keep her and her family in my daily prayers.
Such a beautiful ANGEL!
......Philip
Post by: stringstretcher on June 12, 2013, 07:11:00 PM
Post by: 4dogs on June 12, 2013, 07:39:00 PM
Post by: BenBow on June 12, 2013, 11:10:00 PM
"What a difference a day can make. Lucca is doing a lot better. They were able to wean her off the sedative which meant we were able to move back to the sixth floor. We have our old room again and we have a bathroom! :) The room is way bigger and more comfortable and no community bathroom is great. It's like I went from being at camp to being in a hotel. Her belly pain seems to have gotten much better. She isn't nearly as sensitive. She sat up today a few times and played with toys. By this evening I got a smile. It was so nice to see. They wanted me to start feeding her pedialyte so I tried this evening and she drank 3 ounces. She held onto her bottle for a long time. I think she missed it. The doctors were so excited to see her progress. There are still some areas of concern. Her belly and her heart rate. They feel her belly may take time to go down. Her heart rate has been high all day. They feel it could be withdrawal from her pain meds. So we will have to wait and see. But all in all she is doing great. I couldn't ask for more. To see her smile today meant so much. It means she really feels better. Our goals now are weaning off of pain meds and being off antibiotics. The stem cell transplant team told me today that by Monday they should have a really good idea of how much longer she will have to stay in patient. I asked if it may be a couple weeks and they thought that was way too long. After we are discharged we will be at the Ronald McDonald house for 1-2 weeks depending on how she is doing and how her blood levels are. I don't know many specifics in terms of when radiation will start, what Lucca will be allowed to do, or time frames but I am sure that will all be clear over the next week. But for today she has made incredible progress and that makes me very happy. I love this baby so much and I am so glad to not see her in such agony. Yay for her today!"
Post by: Big Ed on June 13, 2013, 07:43:00 AM
Post by: Doc Nock on June 13, 2013, 10:18:00 AM
Thank you, Lord!
Post by: Rookie@51 on June 13, 2013, 06:15:00 PM
Post by: MR BILL SHORTY on June 13, 2013, 08:31:00 PM
Post by: VictoryHunter on June 14, 2013, 10:55:00 AM
Post by: zarch on June 16, 2013, 04:24:00 PM
Post by: BenBow on June 17, 2013, 09:25:00 AM
Tv Link (http://www.wndu.com/home/headlines/Michiana-residents-come-together-to-help-9-month-old-girl-fight-cancer--211712591.html?device=tablet#.Ub5ez-fB7CI.facebook)
Post by: Doc Nock on June 17, 2013, 10:09:00 AM
May Lucca and the Miller family both survive this ordeal and watch that pretty baby grow into a great servant of He who has watched over her.
Lord in your Mercy
Post by: MR BILL SHORTY on June 20, 2013, 03:54:00 PM
Post by: Cyclic-Rivers on June 20, 2013, 09:01:00 PM
Post by: BenBow on June 24, 2013, 09:53:00 AM
Post by: 4dogs on June 24, 2013, 11:32:00 AM
Post by: Doc Nock on June 24, 2013, 10:00:00 PM
Wonder what they can do to put those poor, poor parents back together again...and their finances?
Prayers for the baby to indeed come out well and clean--- and the parents to find help with bills!
Lord in your Mercy...hear our prayers.
Post by: MR BILL SHORTY on June 25, 2013, 08:20:00 PM
Post by: zarch on July 02, 2013, 11:43:00 PM
Post by: Doc Nock on July 03, 2013, 07:52:00 AM
Prayers continue for the darling baby...
after all this, Lord in your Mercy, please heal this child!Amen
Post by: BenBow on July 07, 2013, 07:38:00 PM
(http://images.imagelinky.com/1373240078.jpg)
Lucca and her mom Mary
(http://images.imagelinky.com/1373240410.jpg)
Post by: 4dogs on July 07, 2013, 08:31:00 PM
Post by: Rookie@51 on July 08, 2013, 12:45:00 AM
Post by: Doc Nock on July 08, 2013, 07:46:00 AM
Thank you, Lord!!!
Post by: bowslinger on July 10, 2013, 01:47:00 AM
Post by: BenBow on July 10, 2013, 06:40:00 PM
"Lucca started radiation today. It was originally supposed to start Monday but for some reason was delayed till today. She did well. There is not too much to it. She is sedated each day which is probably the worst part about it. We do that first and I can be with her. Then they wheel her away and do their thing. Today she was back within an hour maybe less. Then the rest of our time is waiting for her to wake up so we can leave. Each day they said she will be asleep for less time once they find the perfect amount to give her to keep her asleep for just the procedure. The side affects are nauseas, loss of appetite, hair loss, and feeling tired. She seemed ok today maybe just a little more tired. The other big thing they are watching is her liver for the VOD (clotting of the liver). They put her on another medicine to help with this over the next two weeks.
Dr. Cohen stopped by today to talk about Lucca's next steps. The immunotherapy will begin sooner then I thought. Once she has recovered from radiation she will start. I can't imagine her needing much more than a week to recover from radiation so we will definitely be starting this before her 100 days are up probably in August. This means Sunday through Friday she will be in the hospital for the first treatment, then she will come home for two weeks. The second treatment will be Sunday through Friday, home for the weekend, and then back again for Sunday through Friday, then a week off and back to the other plan. You rotate plans and do five treatments two long three short.
Although it will mean our road isn't over and more hospital stays its important to do this sooner rather than later. There still may be microscopic nueroblastoma cells wandering around Lucca's body waiting to grow and we don't want to chance that.
On a happy note Lucca gets to go home this weekend!!! Just for the weekend but that is super exciting!! I'm sure she is going to love it. So far she has loved having more freedom. We go on walks and she seems very memorized by everything.. We have had to go to Target a couple times for necessities and she has enjoyed that too! :) it will be great to be home even if it is a couple of days. :) "
Post by: Doc Nock on July 10, 2013, 08:44:00 PM
Hair loss? Liver clotting?
It seems there are many, many miles to go for this darling child and her parents! I cannot fathom the depth or scope of medical bills they face, even with insurance!
To have come so far... prayers for continued resilience and constant progress toward total healing!
Lord...in your wondrous Mercy...hear our prayers
Post by: DennyK on July 11, 2013, 07:01:00 PM
Post by: zarch on July 12, 2013, 04:43:00 AM
Post by: BenBow on July 18, 2013, 08:34:00 PM
"I apologize I haven't posted in awhile daily radiation keeps you busy. Each week day Lucca goes to the hospital around 11:30. She is sedated around 12:15 and heads to radiation at 12:30. She is usually gone about 40 mins when she returns she sleeps for awhile and then we try to wake her up and have her eat. We usually get to leave around 3. Sometimes she has other appointments and sometimes she has to stay longer for a blood transfusion. The rest of the time we are in our room playing and often doing laundry( she gets sick a lot).
So far she is doing well with the radiation. Her nausea has increased a lot and I think her belly hurts. She has had an increase in diaherra and she crys through out the night. I think it is because her belly is bothering her. Last night I gave her some Tylenol and it helped a bit. But otherwise as many of you have seen from pictures on Facebook she is happy and playful. She has her moments like anyone but she is doing well overall.
we went home last weekend for the first time since May. She really loved it. She loved seeing her siblings and pulling their hair and touching their faces :) . It was really cute. It made it harder to leave. We will go home again this weekend. When we return Monday she will have four more days of radiation and I think we will get to come on Thursday for a bit longer. My guess is a couple weeks. Once her counts recover from her radiation she will start the immunotherapy. We will be inpatient but only for a week at a time and we will get to come home on weekends and there will be breaks through out. It will be better but still hard. I think this will go through December or so."
(http://i122.photobucket.com/albums/o241/galnmax/lucca1.jpg)
The chemo has Lucca puffed up.
(http://i122.photobucket.com/albums/o241/galnmax/lucca2.jpg)
Post by: Doc Nock on July 18, 2013, 10:18:00 PM
Amazing what the human spirit can withstand and embrace when there is such trust and faith in the Lord as with Lucca's parents show us.
I'm overwhelmed by their attitude. The little child has known little in her young life but all this turmoil, but to be the parents working so hard to hang on, hold out, and remain in constant vigilance and live on prayerful hope and faith!
The Lord must smile when He looks down on each of them in this family!
Lord in your Mercy, continue to be with them all and hold Lucca gently in your loving hands thru this trial. amen.
Post by: 4dogs on July 18, 2013, 11:08:00 PM
Post by: BenBow on July 19, 2013, 09:52:00 AM
Post by: Doc Nock on July 19, 2013, 03:17:00 PM
I have grown and been humbled at the same time reading her parent's trial and journey of Faith.
Amazing people...
Lord, in your Mercy, continue to bless Lucca. Amen.
Post by: BenBow on July 19, 2013, 06:21:00 PM
Post by: zarch on July 20, 2013, 11:05:00 AM
Post by: BenBow on July 20, 2013, 01:29:00 PM
Post by: GRINCH on July 20, 2013, 05:06:00 PM
Post by: Rookie@51 on July 21, 2013, 04:23:00 PM
Post by: GRAYBEARD on July 22, 2013, 08:19:00 AM
Post by: BenBow on July 25, 2013, 05:04:00 PM
(http://i.imgur.com/0pPWAHB.jpg?1)
Post by: 4dogs on July 25, 2013, 06:18:00 PM
Post by: Doc Nock on July 25, 2013, 06:29:00 PM
Now it's what? Stem cell or something? Know nothing about all that, but thru her Mom's updates you share, Galen, we'll all learn more.
Prayers continue for complete success
Prayers of Thanksgiving for progress to date!
Thank you, Lord!
Post by: DennyK on July 25, 2013, 07:05:00 PM
Post by: Big Ed on July 25, 2013, 09:47:00 PM
Post by: BenBow on July 29, 2013, 08:10:00 AM
Post by: Doc Nock on July 29, 2013, 12:27:00 PM
A Child being a child and crawling around getting into stuff and being underfoot!
Yeah, God!!! Thank you, Lord... Stay with this li'l one till she's all cured and healed up!!! Amen
Post by: Keefer on July 29, 2013, 04:45:00 PM
I will keep her in our prayers and so glad to see that she's been home with her family...God continue to be with little Lucca and cure her of this cancer please...In Jesus name I pray!
Keefers <><
Post by: zarch on July 29, 2013, 11:45:00 PM
Post by: BenBow on July 30, 2013, 09:14:00 AM
Post by: Doc Nock on July 30, 2013, 05:54:00 PM
God brought her this far...if she has to live with hearing impairment, and can be cancer free, I'm sure her parents will find ways to help her cope.
On the other hand...perhaps the Good Lord will see fit to allow her full recovery of all systems.
Lord, In your awesome Mercy... hear our prayers.
Post by: BenBow on July 31, 2013, 12:48:00 PM
He's watching over her and walking through it with her. May God richly bless all of you prayer warriors.
Post by: Doc Nock on July 31, 2013, 02:24:00 PM
Better than GREAT!
Thanks for the updates, Galen...and the privilege to carry this dear child and family in prayers!
Post by: bowslinger on August 08, 2013, 02:29:00 AM
Post by: GRAYBEARD on August 08, 2013, 08:56:00 AM
Post by: JEFF B on August 08, 2013, 04:19:00 PM
Post by: Doc Nock on August 09, 2013, 10:50:00 AM
Post by: tradarcher816 on August 11, 2013, 05:15:00 PM
Post by: BenBow on August 19, 2013, 09:26:00 AM
Post by: Doc Nock on August 19, 2013, 08:52:00 PM
Prayers continue for the wee one, Lucca, and for her Mother, Mary and father,--- that the Lord will hold them all close to his heart and carry them when needed.
Post by: BenBow on August 20, 2013, 03:22:00 PM
"Immunotherapy is hard. Yesterday Lucca was in a lot of pain. It took all day do get her morphine dose to the right place where she could feel some relief. They tell me it's painful, a lot of kids complain that there bellies hurt and their legs and arms. She must have been hurting because she cried and whimpered most of the day and just seemed agitated. The beginning of the day was difficult because she felt good but she couldn't move around the way she wanted so she was incredibly frustrated. I wasn't sure what I was going to do. I could not help her be happy. I asked the nurse what other moms with babies her age do and she said they put them in a crib. So we got a crib but its confining so its just really hard. Thankfully she sleeps a lot now that the morphine has kicked in. I can't really put her down too long. Sometimes long enough to go potty and other times not. So showering is out. I'm not sure how I will get one of those in. I'm just living for Friday when this is over. "
Post by: 4dogs on August 20, 2013, 06:10:00 PM
Post by: Doc Nock on August 20, 2013, 08:00:00 PM
MOre difficult times for that poor, poor child. Will she ever know peace and childhood joy?
Only God knows but He's been with her through thick and thin and the only way parents can endure to this level is thru the Holy Spirit's presence and strength!
Mark, you sound like you've had a rough road too...
May God bless all families who struggle and devote themselves so incredibly to children with such major ailments...
Hard to understand that folks would drop a child and leave. We all cope differently I suspect...but that is so very sad!
Lord in your Mercy, hear our prayers
Post by: zarch on August 21, 2013, 12:41:00 PM
Post by: DennyK on August 27, 2013, 06:56:00 PM
Post by: BenBow on August 28, 2013, 07:50:00 AM
Here's a new picture
(http://i.imgur.com/fmLEJSV.jpg)
Post by: Doc Nock on August 28, 2013, 08:42:00 AM
Oh, my... I constantly am overwhelmed to think what she and this family/parents have been thru.
It's been a personal pleasure and humbling experience to keep these people lifted up in prayer! They are true believers! And as such, a true inspiration to me!
Prayers continue thru this next stage of healing!
Post by: BenBow on August 28, 2013, 12:36:00 PM
(http://i.imgur.com/7E8EHwT.jpg)
Post by: DennyK on August 28, 2013, 06:49:00 PM
Post by: Doc Nock on August 29, 2013, 02:15:00 PM
Post by: BeNoIt on August 29, 2013, 02:23:00 PM
Post by: zarch on September 02, 2013, 10:19:00 PM
Post by: zarch on September 02, 2013, 10:28:00 PM
Post by: zarch on September 02, 2013, 10:33:00 PM
Post by: GRAYBEARD on September 03, 2013, 11:43:00 AM
Post by: Al Dente on September 03, 2013, 05:50:00 PM
Post by: BenBow on September 13, 2013, 10:08:00 AM
"Isle 2 has been much kinder to Lucca than the chimeric was. There is no pain or irritability. She is mostly herself which is great! The only problem, keeping her entertained and not moving. She wants so badly to crawl all over and stand up and she has to be extremely careful. She could easily pull her line right back out. She has already stretched it considerably so it's constantly twisting and making her pumps go crazy with beeping.
We were going to be able to leave after this medicine finished at 9:30 am but Lucca's line has not been working on one side. It will not flush well and will not draw back at all. They have tried some TPA and left it in to see if it will break up the clot but no luck. So as of now they are trying to get us in some where down stairs where they will put in a dye and then try to follow it to see if there is a clot and what they are working with. At that time they will decide if its ok and they can use it next week with both of the drugs Isle 2 and Chimeric. They need two lines next. If not well then it looks like she will have surgery today to replace it :( . Which really, really stinks. But we have no choice she needs her medicines to kill any cancer left so what are you gonna do? Nothing is every easy or goes as planned.
Lucca and I are going crazy in here though, that's for sure. She is over her toys and they are new ones from her birthday. And I'm pretty sure she is tired of looking at my face. I still like looking at hers though. Hopefully we get out of her soon."
(http://i.imgur.com/2vjXeYt.jpg)
Post by: DennyK on September 13, 2013, 06:48:00 PM
Post by: Doc Nock on September 13, 2013, 08:35:00 PM
Always something but then given what she's been through and is going thru, would anything BUT complications be expected?
Lord in your Mercy...hear our prayers
Post by: maddingo on September 13, 2013, 09:11:00 PM
Post by: BenBow on September 16, 2013, 08:01:00 AM
Quote from mom.
"This week things will go as scheduled. She will start her chimeric tomorrow. This is the painful week. She will be on her morphine and honestly I just pray she sleeps for a week. Then when she wakes up she will feel good and be home for three whole weeks baring no mishaps!!! I would sleep a week for that."
Post by: Doc Nock on September 16, 2013, 11:32:00 AM
Prayers that the morphine will work and not just make the child restless... and give the whole of them a break to refresh and renew!
Lord, in your awesome mercy....
Post by: GRAYBEARD on September 17, 2013, 03:18:00 PM
Prayers continue.
Post by: Stone Knife on September 21, 2013, 05:59:00 PM
Post by: BenBow on September 23, 2013, 09:25:00 AM
Thanks all
Post by: Doc Nock on September 23, 2013, 03:22:00 PM
Indeed, prayers for the parent's discernment to be His Will and not ruled by their heart for the child's suffering. After all this... what a tough choice!
I can't help but wonder what goes thru the small child's mind?
Lord in your Mercy....
Post by: zarch on October 01, 2013, 01:39:00 AM
Post by: BenBow on October 01, 2013, 10:24:00 PM
Post by: BenBow on October 06, 2013, 10:31:00 PM
"It has been a while since I posted so I thought I should give an update. Lucca has been doing well since returning home. She was able to work off the extra fluids in a few days and was feeling back to normal. She has been trying to walk some. She is pulling herself up a lot and walking around furniture. Ben said yesterday she stood on her own for 14 seconds :) . He is pretty specific. She is eating more and feeling good. She and Sophia fight regularly and Lucca even pulls Sophia's hair when Sophia takes things from her or pushes her around. It's pretty funny.
We have enjoyed our time at home. It is going by so fast though. It's hard too. It's hard to get everything done and the girls are crazy. But that's the life of a mom. Every day is an adventure!
I wanted to say thank you to all of you. I really appreciate you continuing to think of our family. It's hard to believe it has almost been a year we have been on this journey. The support and kindness from all of you has made it bearable. I'm not sure what the future holds but I know we have some amazing family and friends to support us! Thank you."
Post by: Al Dente on October 07, 2013, 10:09:00 AM
Post by: Stone Knife on October 07, 2013, 09:12:00 PM
Post by: Doc Nock on October 07, 2013, 09:18:00 PM
Post by: BenBow on October 08, 2013, 02:45:00 PM
(http://i.imgur.com/nCTrUD7.jpg)