Hello Family and Friends,
I am writing to report that all is well with Kayla.
This very day, last year, we set up for a road trip to St Jude Hospital in Memphis, TN after being given the news that Kayla had a large tumor around her spine and in the lower abdomen. This day marked the beginning of our challenging journey that all of you know has a happy ending. After three rounds of chemotherapy and two surgeries Kayla has made a complete recovery through the help of many skilled and dedicated individuals, a first class hospital, and your support and prayers. We do not make any excuses about our faith in God and our belief that Kayla’s recovery was the subject of “Divine Intervention”. We have seen a miracle right before our eyes but we have also seen YOU, ALL OF YOU AND MANY OTHERS, do acts of kindness toward Kayla and us. You and many others, made a conscious and deliberate decision and effort to help us, support us and love us in such ways that we will never be same. You showered us with love, prayer and gifts making our load along the journey so much lighter. For that we say THANK YOU.
Our prayer is that the investment you made on us, will be multiplied in your own lives in ways well beyond your greatest expectations. We pray for the doors of Heaven to open up and for the blessings of God to over flow in your lives.
As for Kayla, well she just celebrated her 6th birthday on April 10th and this was all she imagined it would be.
Blessings,
Carlos, Linda, Kayla and Alex
We are back home in Mobile, AL.
Left Memphis on Thursday afternoon, spent the night in Jackson, MS. and arrived in Mobile on Friday morning. Many gifts were waiting for Kayla and Alex at our arrival plus a very clean house. We got to visit with our church family on Sunday.
It is great to be back
We had a nice and quiet weekend. The kids enjoyed the Pink Palace very much including the IMAX movie. Kayla’s recovery is evident more and more every day. Tomorrow we will see Dr Muhlbauer who will determine how much longer we stay in Memphis.
Praise God for Kayla’s fast recovery, she is eating solid food, done great in physical therapy and is being discharged from the hospital this afternoon. Her legs are getting stronger and she is looking forward to go to the Target House. We may do something fun this weekend like going to the Children Museum or the Pink Palace.
She will be seen by doctors again on Tuesday and Thursday but will have physical therapy every day of the week while in Memphis. It is very likely we can go home as soon as next Friday.
Our prayer focus is still on the recovery from surgery but also on the strengthening of her spine.
Kayla continues to surprise doctors and nurses for the way she is progressing. This afternoon she was taken out of ICU, all IV’s removed including the NG (nasal gastric tube). She has been taking small steps with the use of a walker. We are rejoicing for the way GOD has shown himself through our daughter. She is likely to start on a liquid diet as soon as tomorrow with solids to follow in the next couple of days.
I saw pictures of the removed tumor this afternoon, the size was slightly larger than my fist. I could not believe my eyes and a the same time was relieved to know it was no longer in Kayla’s body. Her body has been restored to the perfection The Father created her.
Ms Honey (Linda’s Mom) is going back to Mississippi tomorrow, so from here on is just us (Linda, Kayla, Alex and Me).
Surgery today culminated with the successful removal of the tumor. The main surgeon indicated that “the tumor came out rather easily”, no complications, no sharing blood supply with the kidney or any other organs, just like we prayed for. Kayla is recovering nicely but will be heavily sedated for the next couple of days. Thank you for your prayers, they have indeed been answered.
The Target House offers many distractions for children. Kayla and Alex had a great time today playing in the “Play House” equipped with toys galore, TV, tables, chairs, play kitchen and a mini restaurant booth.
We are gearing up for the next surgery on Monday at 8:30 am at St Jude Children Hospital. For this procedure the surgeons will come from the front lower left part of the abdomen to remove the remainder tumor mass that is pressing her kidney upward.
Our prayer needs:
- Please pray for the surgeons to have supernatural skills to avoid damaging any organs.
- For Kayla to have a quick and painless recovery.
- For NO COMPLICATIONS during this procedure.
- For the tumor NOT to be sharing blood supply with her left kidney or any other organs.
The nature of the surgery is such that the intestines will go to sleep for 3-5 days after the surgery, therefore she will not be able to eat or drink anything for that period of time. Kayla will have a gastric tube through her nose in order to remove stomach secretions and this is likely to be very uncomfortable.
Showing off my new Spider Man PJ’s
Thanks to uncle Paul, aunt Melissa, Brent and Adrian and many others for the box full of goodies you sent us today. Big thanks also to the Braswell’s for the toys we got yesterday. You are making our stay in Memphis a lot more fun. Thanks to our prayer warriors, silent workers and supporters, your help gets us through the days and weeks.
We continue to be pleased and amazed at Kayla’s recovery. She still needs help getting around but gets stronger every day. Went to St Jude today to meet with Dr. McGregor and everything is in order for Monday’s surgery.
The fact that I was able to stay in Memphis is a great blessing. It would have been very difficult for Linda if I was not here. Thank you again 3001 for allowing me to be here tending to Kayla’s needs.
Tomorrow will be a busy day at St Jude. Lab work, anesthesia consultation, respiratory therapy consultation and a Pre-Op visit at the surgery clinic.
First day out of the hospital was great. The picture below is misleading, Kayla was actually happy to be out and about but as soon as she saw the camera, went into picture pose mode. Pain and discomfort has been minimal.
Not much to report in the next few days. We have appointments at St Jude on Thursday, Friday and Sunday in order to get ready for Monday 21st.
We have enjoyed the many blog entries with words of encouragement. Thank you for taking the time to pray for us.
Dr Muhlbauer order a MRI this morning to see if he had been successful in removing the tumor from the spine. One hour later we had the results and he indeed had cleaned up the spine, inside and out. We really did not know how complicated and risky this surgery was, until now when everyone is happy and almost surprised that Kayla is moving her legs. With our help she has been taking small walks inside the room and this evening she ventured into the hallways of the fifth floor. A physical therapist came to visit and brought a walker for Kayla to encourage her to walk more frequently. Dr Muhlbauer indicated he may be monitoring Kayla for the next fifteen years and that is just fine with us.
She will be discharged from the hospital tomorrow morning and she could not be any happier. We just need to figure out a way to keep Alex away from her. As far as we know the second and final surgery will take place on Monday July 21st. Please continue to cover Kayla in prayer.
Another good day for Kayla. She has started to eat solids and her appetite has improved. She has also been taking small steps. At times it seems like progress is slow but when I saw her back today revealing an eight inch long incision along her spine, I understood why. The brace may need a few adjustments before fitting perfectly, we’ll work on that this coming Monday.
Linda has not left the hospital since Wednesday. Please pray for strength and patience as she watches and helps Kayla recover.
Kayla had a good day again. No pain, no headaches, more liquids, some chicken noodle soup, a new brace and a few steps.
She has been pain free for the most part, she is obviously uncomfortable mainly because she cannot get out of bed. She has made it abundantly clear she does not like the hospital and she wanted to go home today. Well, we all know is a little more complicated than that but every day that goes by we are closer to ending this last chapter.
She is not eating a lot but she is keeping everything she eats. Perhaps tomorrow she will be able to eat solids. The brace was finished today and after a few adjustments, she was ready to try it on. Consist in two pieces, front and back and it fits like a shell supporting her back. As expected she is not very happy about wearing it all day long but that is something we are going to have to deal with.
Finally tonight she managed to take a few steps to go to the bathroom and then back to bed. This is a remarkable recovery considering what she had gone through just two days ago. Our thanks to the staff and nurses at LeBonheur Children Medical Center who have been first class in caring for the needs of Kayla.
The day after surgery has gone well. Early today Kayla experienced some nausea and headaches but at the end of the day she was in much better spirit. She has been moved from ICU to a hospital room and before I left the hospital tonight she was watching a movie (the Aristocats) and drinking Sprite. Linda is staying with her overnight.
The plan for tomorrow is for her to start wearing a back brace and take a few steps. We will remain in Memphis through the second surgery on July 21st plus some recovery time.
Our prayer needs at this time concern the strength and stability of her spine.
Surgery got started at around 8:30 am and lasted for about 4 hours. Hourly updates kept us encouraged. We saw Kayla around 1:30 pm, she was awake but in pain. The motion on her legs and feet was normal and the surgeon was pleased with the outcome. He indicated that the tumor was not as dry as he wanted it, which means lots more work and risk during surgery. A considerable mass was removed including several roots of the tumor.
She will remain in ICU for the next few days until she is stable enough to be transfered to a hospital room. Her pain is being medicated with morphine, so will be somewhat sedated for the next couple of days. The biggest mass of the tumor is still inside and will be removed on July 21st through a second surgery.
Now that the tumor mass from the spine has been removed, there is a concern regarding the stability of the spine. She will be wearing a brace for the next nine months in order to allow the bone and tissue to heal and grow. Please pray for her spine to become stable and grow stronger.
The surgeons describe the tumor as being wrapped around her spine, we believe however that the arms of the Father are wrapped around Kayla and trust in his mighty power and never ending love to be with her.
Taken this morning before surgery
Its a go for surgery tomorrow morning at 8:30 am. Please pray for the surgeons to find a DRY TUMOR or better yet no tumor at all.
Tomorrow’s surgery is designed to remove part of the tumor that is palpable in Kayla’s lower back and is also wrapped around her spine. This is the most delicate part of the surgery because of the location. The approach will be directly from her back. The largest part of the tumor will be removed on July 21st through a large incision in her front lower abdomen.
We are at St Jude in Memphis once again, for what we believe is the final chapter towards Kayla’s healing.
Blood work done today showed normal counts, so we are on track for surgery on Wednesday at 8:30 am.
We’ll meet with the neurosurgeon tomorrow and will also be moving to the Target House. This is a housing complex sponsored by Target and consist of furnished apartments for the families that will stay for extended periods of time.
As we are finding out more details of the upcoming surgery, the level of concern is also rising, more with Linda than me. Please pray for God’s peace to be upon us as we provide love and support for Kayla.
My heart felt thanks go out to all of you, but specially to the 3001 family for their continued support, your blessings have given me the oportunity to be with Kayla during this critical time of surgery and recovery.
We have our marching orders from St Jude:
Sunday Jul 6
Travel from Mobile, AL to Memphis, TN. This is generally a eight hour trip with some good stops in between.
Monday Jul 7
Blood work, visit with the Oncologist and visit to LeBohner Children Hospital where the surgery will take place.
Tuesday Jul 8
Visit with Neurosurgeon
Wednesday Jul 9
Surgery at LeBohner is schedule for 8:30 am.
I will post more details as they become available.
Thank you again for your prayers and support in this last phase of Kayla’s healing.
Every parent loves their children and I am no exception. However lately I seem to have a deeper love or perhaps just deeper awareness of the love for my children. God has taught me through Kayla’s temporary condition to see people for who they are, to see deeper beyond the skin, beyond the way we look or dress, or speak.
Being a part time photographer allows me to freeze moments in time, and although these are not particularly pleasant times, I am making a effort to capture what I see because after all this is reality. Last night I wanted to try some new off camera flash techniques and asked Kayla if she would pose for me. She immediately stroke a pose, well more than one for me and my camera. Perhaps I see more on these images because I am attached to photography and more importantly attached to the subjects. Alex reluctantly joined in a few minutes later.
The kind of full time job I have allows me to see my children when they wake up in the morning and see them again when they go to sleep. This is a blessing I do not take for granted. The events that have unfolded in the last couple of months have placed things into perspective, what is important, what is not so important. I pray that God grants me the ability and wisdom to raise my children well, teach them to excel and guide them in Godly ways. I may need to read the book of Proverbs again to re-align my thoughts and soak in the Word to be prepared for the years ahead.
We have arrived back in Mobile, Alabama. Got off to a late start but made it home safe. Thank you for the many messages left in this blog and the prayers for Kayla and the rest of our family. Kayla has been feeling well and is so exited to be back home.
The next step is surgery in three to four weeks. A team consisting of a general surgeon, an orthopedic surgeon and a neurosurgeon have to come together and agreed on a time for surgery. Because of the location of the tumor and the size, this may require two separate surgeries one or two weeks apart.
To all of you Prayer Warriors we say THANK YOU.
Arrangements have been made for us to go home tomorrow morning (May be lunch time by the time we get going). Last infusion of Itoposide being done tonight. No pain to report. Praise God!!!!
Kayla was medicated for pain early this morning. The rest of the day was very good for her. As you can see from these pictures taken today, she was very well entertained. Volunteers where on hand this afternoon with music, gifts, singing and clapping. Later in the evening games kept her and Alex in very good spirits. Around 9:00 pm this evening, she had a bad headache followed by vomiting, possible side effects from the Cyclophosphamide given last night. Tonight and tomorrow night she will be infused with Itoposide which has been very gentle on her in the past.
Alex gets sad in the evenings when we leave the hospital asking when mommy will be coming back to put him to sleep, then in the next breath he tells me to go play with him. I have to admit that in a strange sort of way I have enjoyed the bonding him and I have developed in our stay in Memphis.
So far there is every indication that we will go home on Friday.
Kayla has been admitted into the hospital. The third round of chemotherapy will start tonight with the infusion of Cyclophosphamide and Itoposide. Kayla has had these two medications before with no major side effects. Please continue to pray for Kayla’s body to be strong and to recover quickly from the low blood counts.
G-CSF shots will have to be given for seven to ten days to stimulate the production of white blood cell and avoid extreme low blood counts. We are still hoping to go back home on Friday.
Kayla did a have an episode of severe leg pain this afternoon. She has complained about pain before, but this time seemed to be the most severe Linda has seen. She was given different medications including morphine before all the pain was gone.
Drove back to Memphis on Sunday after church. We arrived well and checked into the Memphis Grizzly House (accommodations provided by St Jude). Today Kayla was under sedation for an MRI. The preliminary results indicate no significant changes in the tumor, however the neurosurgeon has yet to make a complete evaluation.
Tomorrow Kayla will be under sedation again for a CT Scan with contrast. The scan itself is scheduled for 1:00 pm but she will have to start taking the contrast at 10:00 am.
The tentative schedule is for Kayla to undergo a third round of chemotherapy treatment. Our logical question was if the tumor is not changing size why more chemotherapy? Well the neurosurgeon and the oncologist feel that perhaps the blood supply to the tumor will be affected resulting in an easier later removal.
She will be admitted to the hospital tomorrow afternoon to start the treatment in the evening. The treatment will last for three days so we are likely to go back to Mobile on Friday.
We are back home from Providence Hospital (not a big trip since the hospital is five minutes from our house). Ended up coming home on Sunday afternoon. Kayla did not have fever since Thursday but her blood count was low, in fact she had a Hemoglobin transfusion on Saturday and a Platelets transfusion on Sunday.
Her blood count was back to normal when we left the hospital yesterday therefore she does not have to be given the daily G-CSF shots. Needless to say, Kayla was very happy to come back home. She had repeatedly complained about being “stucked in that hospital room” without going to play and without going to O’Charlies for dinner, anyway you get the picture. She told Linda last night that she wanted to have grits with lots of cheese for breakfast.
Kayla finally had a chance to open presents from Tia Lilly and Abuelita. Alex had his chance earlier in the week. They were both thrilled to open boxes and play like brother and sister (or should I say fight like brother and sister). I know Alex is starting to feel left out, please pray that we will have wisdom to care for his needs as well as Kayla’s.
We are still scheduled to be at St Jude in Memphis on Monday 9th for MRI and CT scans. It is unclear at this point what the next step would be, what is clear is our belief in God and his mighty power, our knowledge that Kayla will be healed by whatever means The Father chooses and that the name of Jesus is to be glorified every step of the way.
Kayla continues to do well this morning. She has been without fever since last night, however she will have to remain without fever for 48 hrs before allowed to go home. Blood Cultures are being done every 12 hrs and antibiotics administered every 6 hrs to help her body combat infection. They have not determined the cause of the fever and we may never know. The latest blood count showed an upward trend therefore she may be coming home sometime on Saturday.
Linda has been staying at the hospital while Stephanie Carter (sister in law) and Ms Honey (mother in law) take turns with Alex. I am dividing my time between work, home and the hospital. Kayla’s pediatrician has been of amazing support to all of us. She is indeed a prayer warrior and a great source of confidence and strength. We appreciate and love her very much.
We welcome our family from Honduras to our prayer arsenal, it is good to have you on board. Our family has been showered with attention and prayers and for this we are eternally grateful. My words are not adequate to express how much this means to us. It is one thing when people do nice things for you, but when people love your children that is a completely different game. You have done just that, you have loved our children and that touches a very tender spot in our hearts.
Please continue to pray for infections to leave Kayla’s body and for her blood count to go back to normal levels while we gear up for our next trip to Memphis.
Kayla developed a fever last night and had to be taken to Providence Hospital. She is being medicated with antibiotics. Her low blood count and fever requires hospitalization and close monitoring for next couple of days. Please pray for her white blood cells to come back up so her body can fight whatever infection there is.
We are back in Mobile after a safe day of travel. Kayla’s apetite has increased slightly and no nausea nor vomiting to report, “Praise GOD”. Her energy level has also increased.
Our next visit to St Jude is on June 9th. CT scan and MRI will help doctors evaluate shrinkage and how to proceed. We continue to pray and expect Divine Intervention, as doctors assess the current situation and plan the next move. In the next two weeks blood counts will be done twice a week.
So many of you have invested time and prayers, extended your helping hands, sent cards, e-mails, food and money. We are so grateful for your good deeds and pray that it will be returned to you in abundance and in ways that you have never expected.
Blessings,
Carlos, Linda, Kayla and Alex
Kayla is now out of the hospital. She has had very little appetite and a couple of vomiting incidents. I pray for our Heavenly Father to breathe life and strength back into Kayla’s body and for His presence to flood our lives while we continue to stand with our daughter in this difficult time.
We are however driving back to Mobile tomorrow morning.
