Tuesday, May 25, 2010
During Aiden’s original surgery – when the tumor was discovered – some of his pleural fluid was sent to pathology for testing. It came back positive for cancer cells. This was not surprising, however, since all tumors of the diaphragm involve a pleural effusion (excess fluid which accumulates in the pleural cavity). Dr. Hawkins is concerned that if we do not treat Aiden more aggressively now, there is a chance the cancer can come back after treatment. Evidence of malignant cells in his pleural fluid gives us more reason to use a hard-hitting treatment approach.
More extensive chemotherapy, of course, involves more possible side-effects. Special care is being taken to ensure Aiden’s overall safety and comfort. Aiden is receiving appropriate doses based on his age and size. Also, he will receive potent chemotherapy agents (or combination of agents) in the hospital so that he can be more closely monitored. All other chemo treatments will be administered in the outpatient setting.
Given the new therapy decision, Dr. Chang still feels that Aiden should respond quite well to treatment – chemo, radiation and surgery. He also emphasizes that this decision is not based on anything new; a more conservative approach is just being employed. RMS in the diaphragm is very rare and we do not want to take any chances in regards to treatment, under treating Aiden could result in future recurrence.
Aiden has been responding to chemotherapy very well thus far; children truly are resilient. His strength throughout this whole ordeal is awe-inspiring. He is such a happy baby and continues to be the rock for Chris and me. I cannot help but smile when I see his chubby cheeks and wide-mouthed grin. He recovered so quickly after intubation. We were on the HEM/ONC floor only four nights before Dr. Chang decided to send us home.
This past Friday, Aiden was discharged from the hospital and we all headed home as a family. Since then we have been catching up on sleep and trying to find some semblance of our new normalcy. On Monday, Aiden, Chris and I headed to the Children’s National Medical Center outpatient office for Aiden’s scheduled chemotherapy treatment. Unfortunately, his port was not drawing back blood yet again. It is essential that Aiden’s port works properly. Dr Chang contacted the pediatric surgery department at Fairfax Hospital and scheduled Aiden for Mediport replacement surgery.
Aiden will be heading to the operating room tomorrow morning (his third surgery this month). He will get a new port and then we will travel to the Children’s outpatient office for chemotherapy. Though Mediport surgery is very quick, I am upset that Aiden has to go through it yet again. Please think about my little guy tomorrow and, as always, keep him in your prayers.
Leslie and Chris
Monday, May 24, 2010
Prayers are always welcome.
Leslie and Chris
Tuesday, May 18, 2010
Monday, May 17, 2010
Chris and I stayed up all Friday night to do our best to comfort Aiden. We experienced a few very difficult moments but were able to make it through with the support of the night nurses, residents and doctors. Symptoms of withdrawal may include, but are not limited to, fever, yawning, hand and leg movements, sleeplessness, mouth movements, gagging and diarrhea. Aiden experienced all of these indications but, at the time, his fever elicited the greatest concern.
Early Friday morning, before extubation, a sign was hung on Aiden’s door to highlight his neutropenic status. Neutropenia is a common side effect of Dactinomycin, one of the chemotherapy drugs he received during his first round of treatment. Neutropenia is characterized by a very low white blood cell count. The neutrophils found in white blood cells help our bodies ward off infections by destroying bacteria found in our blood. About a week after receiving Dactinomycin, Aiden’s white blood cell count began to significantly drop and have now reached zero. Special precautions have to be taken during this time to ensure that he does not come in contact with any bacteria or infectious people. He will probably be neutropenic until the end of the week. This will continue to occur about once a month for about a week or two following each Dactinomycin treatment.
Since Aiden started a fever on Friday, antibiotics were administered immediately. Low temperatures as well as high temperatures, even those only slightly above the norm are worrisome when a person does not possess the necessary white blood cells to combat illness. Aiden was immediately started on two strong antibiotics. Even though his fever may be withdrawal induced, we do not want to take any chances. Blood work was sent to the lab to test for bacteria but takes at least 24-48 hours for results.
By Sunday, Aiden really started to come out of withdrawal. He had been up for 50 hours straight and at around 2:45 in the afternoon, he finally decided to sleep. He actually slept well into the evening and awoke with a smile on his face. Chris and I were elated to see the sweet gummy grin! He is continuing to do well, though, he currently has another fever. As long as he remains stable today we will be moving to the HEM/ONC floor tonight! They deal with neutropenic fevers often so we do not have to stay in the PICU to tackle that obstacle.
Thank you again for all of the encouragement, even when we are a bit unreachable. We look at the prayer circle and websites often - all of your kind words and prayers comfort us when we start to become a bit overwhelmed. Also, thank you all for understanding that we cannot have visitors right now, even when we move to HEM/ONC. Aiden is just too susceptible to germs. Once his counts start to go up and we get more instruction from oncology we will let everyone know. I want to also take a moment to thank everyone who has set up various fundraisers for Aiden. The support and outreach is amazing and we will forever be indebted to you all for your generosity and caring attention.
We are continuing to move forward and stay as positive as possible. We pray for Aiden’s swift recovery and strength throughout treatment. Please keep him in your prayers as well. Thanks again for everything.
Leslie and Chris
Facebook: Aiden’s Prayer Circle
Thursday, May 13, 2010
Mediport placement surgery did not happen yesterday. Chris and I received a call from Aiden’s Oncologist, Dr. Chang, explaining that Aiden needed a MRI to identify the original volume of the tumor. This is essential for radiation planning. Radiation oncologists use radiation beams to intersect at the tumor site or original area the tumor occupied. (We hope that the tumor has shrunk some due to chemotherapy by the time we begin radiation.) We are not yet certain of Aiden’s radiation schedule but we do know that we will be traveling to Boston so that he can receive proton beam radiation therapy at Massachusetts General Hospital. Proton beam radiation is especially importation for young pediatric patients because the radiation dose can be more precisely localized which helps reduce scatter. Aiden may receive 6 weeks of radiation therapy (5 days per week), but as I mentioned before, we have yet to confirm all the details. Dr. Chang wants Aiden to be a bit older and have a few more rounds of chemotherapy before we start radiation.
Since his MRI occurred mid-day yesterday we were not able to get him into the operating room for surgery. He is on the schedule today for port placement and may head to the OR around 6:00 this evening, but we are still awaiting final confirmation. This should be a very quick procedure and we hope to extubate following surgery while he is in recovery. If he gets out of surgery too late, though, we will have to wait until tomorrow morning to remove his breathing tube.
Following extubation, we will have to address Aiden’s medication dependency. Aiden has been on quite a few medications for sedation and pain so we will be weaning him off those over the next couple of days. If all goes well, we may be heading to the hematology/oncology floor tomorrow or this weekend!
Over the past couple of days, a few people have inquired as to whether Aiden will need surgery to remove the tumor. At this point in time, we are sticking to the chemotherapy/radiation regime. His tumor is a solid mass and is very vascular in nature (heavily endowed with blood vessels). If we were to go in now and remove it, bleeding would become a concern. During Aiden’s first surgery, he ended up getting a transfusion because he had already lost so much blood. We do not want to knowingly put his body in that position again. It is best to shrink the tumor down and discuss surgical options later.
The power of prayer and positive thinking is amazing! Thanks for keeping Aiden in your hearts. We will continue to keep you all updated. Also, keep your eye out for several fun events coming up this summer to celebrate the strength of my little fighter.
All our love,
Leslie and Chris
To order a shirt, please do the following:
1. http://www.olivetosew.com/ (Click this link)
2. Click on the "Aiden Lipscomb" link on the left hand side
3. Choose a size (Adult sizes S-XL; Youth Sizes S-L; Toddler Sizes and Infant Onesies available)
4. Make sure to select OUT OF STATE shipping EVEN if you are in the NoVa area. This will add back the price that the current sale price is taking off.
Once we get most the orders in, we will order and have them for delivery in about 2-3 weeks. All proceeds will go to the Lipscomb's for their medical bills and to help pay for their medical trip to Boston in a few months.
Thank you to EVERYONE!!!
Wednesday, May 12, 2010
Aiden ended up not getting a bronchoscopy Monday morning as planned. Dr. Craig Futterman, pediatric critical care physician, decided that he wanted to do an ultrasound first to make certain the procedure was necessary. He performed the initial ultrasound himself and then called in Dr. Nakul Jerath, pediatric radiologist, to also take a look. Dr. Jerath noted pockets of fluid around the upper part of his lung. When examining the lower region, he observed the tumor occupying much of the space. After the procedure, Dr. Futterman and Dr. Jerath then consulted with the team of physicians treating Aiden. It was unanimously decided that Aiden did not in fact need a bronchoscopy. Since the bronchoscope would go down his trachea it would not be able to get past the mass. Plus, we already know that pockets of fluid are present; the bronchoscopy would duplicate efforts in that respect.
The best thing for Aiden now, is to get him breathing on his own. Even though his right lung is not able to expand yet – due in most part to the mass – his left lung is functioning very well. We are able to survive on one lung and it is believed that Aiden was doing so for a little while before we brought him to the hospital. Extubation should give Aiden’s lungs the opportunity to work and heal on their own. We expect much of the fluid to resolve with a little time and the mass should start to shrink, with the help of chemotherapy, over the next several weeks. His chest x-ray actually looked a bit better today (in the uppermost region of the lung) which is good news. Now we are finalizing our plan for extubation.
When Aiden was in surgery last Tuesday a central line was placed to make medication easy to administer. This made sense at the time since we thought we were dealing with an infection. His central line now serves a different purpose – chemo purveyor. Unfortunately, central lines are not permanent and can cause complications if left in too long. Since Aiden will require weekly intravenous medications, a more permanent port is necessary. A port is a very small medical appliance that is placed under the skin. A catheter then connects the port to a vein. Aiden will be going into surgery today to receive his port. As long as he wakes up well from the anesthesia, he will be extubated following recovery. I cannot wait to see his big brown eyes.
Following extubation, Aiden will be further weaned from many of his pain and sedation medications. This is a slow and sometimes unnerving process as he will be uncomfortable and likely not recognize us as his body goes through withdrawals. The doctors have reassured Chris and I that this is just temporary and our sweet baby boy will be back to himself very soon. As long as Aiden recovers well and we do not run into any complications, we should be moving to the Hematology/Oncology floor later this week.
Thank you again for thinking of us – especially my amazing baby boy. Your prayers are getting us through the difficult moments and helping us cherish every little miracle. The number of visitors to this blog as well as Aiden’s website never ceases to amaze us. Also, thank you all so much for joining his prayer circle on Facebook. We are just shy of 550 members, which is remarkable since the group was only created a few days ago.
More prayers are always welcome.
Leslie and Chris
Tuesday, May 11, 2010
Thanks everyone for your continued support!!
Monday, May 10, 2010
We received some amazing news, the bone marrow biopsy showed no presence of cancer!
Dr. Chang called us during his weekend off to share the findings. Since Aiden does not have metastatic disease we are moving forward with a 43-week chemotherapy schedule which will later incorporate radiation and may include surgery. Chemotherapy is used to attack cancer cells which divide very quickly. Normal, healthy cells – on the other hand – grow in an orderly fashion and replace old or damaged cells. Aiden’s chemo is being administered intravenously (right into his vein) to combat the rapidly-growing, out-of-control cells.
His regimen consists of three drugs: VinCRIStine, Dactinomycin and Cyclophosphamide – also known as VAC. The VinCRIStine and Dactinomycin are quickly pushed through an IV, while the Cyclophosphamide is administered slowly over a 60 minute period. Most chemo side effects, if any, appear about 10-14 days after the drugs are administered. Children are quite resilient, though, and tend to tolerate chemotherapy quite well – usually better than adults. Aiden had his first round of chemo Saturday night and has responded well to the drugs. We pray that he continues to tolerate these drugs over the 43-week course. I am very proud of my little man.
Currently, the more pressing matter happens to be Aiden’s respiratory condition, not his cancer. Aiden is still using the ventilator to breathe. His daily chest x-rays have not shown improvement since the day following his surgery (last Wednesday). The drainage from his chest tube slowed considerably so Dr. Askew decided to have it removed. Now we are trying to understand why the right lung is not recovering. Pediatric Pulmonologist, Dr. John Osborn, is performing a bronchoscopy on Aiden Monday morning. He will use a bronchoscope to visualize Aiden’s airway and hopefully uncover why the right lung will not expand. I pray that we discover the problem and are able to remedy it without difficulty.
We will continue to be in the PICU until he can breathe on his own. The doctors and nurses here have been amazing – they now feel like extended family. “Residing” in intensive care is not easy, but Chris and I do not want to leave our munchkin’s side. We have turned the window-seat and pull-out-chair into a makeshift bedroom, which suits us just fine. Honestly, I would sleep on the cold, hard hospital floor if it kept me close to my baby. Once we are in the Hematology/Oncology wing (when Aiden is breathing-tube-free), our living situation should improve a bit and hopefully we will be able to entertain a visitor or two. The PICU policy states only 3 people in the room at a time – since Chris and I are both here that leaves only one available space! Luckily the nurses have let grandmas and grandpas visits pretty easily, which is such a blessing – Chris and I have definitely needed them close during this difficult time.
As always, please keep Aiden in your prayers. I am certain that all of the praying thus far has contributed to the small miracles we are experiencing each and every day. Thank so much for your support. I have been reading all of your emails, messages, comments and texts every day and each communication truly touches my heart. I truly feel blessed to have each and every one of you in our lives.
Be sure to check out the website that Aiden’s Uncle Steve and Aunt April created (helpbabyaiden.com) as well as the prayer circle established by Aunt Lisa (Facebook: Aiden’s Prayer Circle). I want to also take this opportunity to thank my dear friend, Kere, for sending out emails, taking calls and putting together this blog.
Please continue to pray for baby Aiden.
Leslie and Chris
Saturday, May 8, 2010
During surgery this past Tuesday, Dr. Allyson Askew, our pediatric surgeon, cleaned out the blood filling his pleural cavity and inserted a chest tube to help with post-operative drainage. She also sent a piece of the tumor to pathology for diagnosis. When Aiden left the operating room he was sent to recovery for a short time and was then transported to the pediatric intensive care unit (PICU). We are still currently in the PICU as Aiden is not yet able to breathe on his own. All patients that are incubated receive a daily chest x-ray to make sure that the tube does not shift. This x-ray also helps us monitor his pleural cavity and right lung.
Aiden is currently suffering from SAIDH which stands for Syndrome of Inappropriate Antidiuretic Hormone. Basically, Aiden’s body is retaining water so he has fewer wet diapers and a slightly puffy appearance. Since we are not seeing improvement on his daily chest x-rays, we think that SAIDH may also be contributing to fluid build-up in his right lung. The composition of our lungs can be compared to a sponge – when dry, it is light and airy, but when the lung is wet, it is very heavy. Aiden is now receiving diuretics four times a day and he is already showing improvement. Hopefully his chest x-ray tomorrow will display similar results! I cannot wait for him to be off the ventilator. Some children can tolerate breathing tubes, but Aiden does not appear to be one of them. He does not like it one bit so we are keeping him well sedated until he is able to be extubated.
Yesterday afternoon Aiden received a bone scan which is a nuclear medicine study. He was injected with a radioactive tracer which goes through the blood and then into the bones. A special camera then took pictures of his cell activity. This scan can show if cancer is present in the bones. We heard soon after the study that his test had negative findings – no cancer was present in his bones. Aiden then received another bone marrow biopsy. During the first biopsy, Dr. Chang was only able to obtain a small sample so he decided to perform it again in hopes of gathering two larger samples. He was successful in doing so and we hope to hear those results tomorrow. PLEASE PRAY that the pathologist finds no presence of cancer in his marrow. Should this test come back negative, we are pretty confident that he does not have metastatic disease. (A CT scan was also performed earlier this week which showed no additional tumors.)
If the bone marrow test is negative for cancer, Aiden’s prognosis is extremely promising. We are most likely joining a clinical trial which is researching rhabdomyosarcoma. It is important to Chris and me to do what we can to help future children that are also diagnosed with RMS. I won’t go too in depth regarding treatment plans as it is very dependent on the marrow results. Regardless of the marrow findings, though, Aiden will have to get several months of chemotheraphy. Once he is a bit older he will also need radiation therapy treatment, which will most likely take us to Boston. Right now, though, we are very hopeful and doing what we can to remain positive for the sake of our little man.
Aiden is a fighter and will make it through this – we all will. Cancer has now touched our lives, but it will not beat us. Aiden, Chris and I are up for the fight and nothing in this world will be able to stop us. Love and trust in God is what gives us hope. Thank you all for your prayers and kind words. The support continues to astound us – we are just so grateful for each and every one of you. Aiden is our everything and I look so forward to seeing his sweet gummy smile again very soon.
Please keep the prayers coming. Thank you again.
All our love,
Leslie and Chris
Thursday, May 6, 2010
We have not been given an address/room number yet since he is still in the PICU. As soon as they move them out of the PICU into oncology, they will provide us with that information and we will post it for all of you that have asked where to send things.
We will update as soon as we hear more.
Thank you again for all the outpouring of support. It's truly helpful knowing that there are so many of you who have offered support in so many ways!
Aiden had his CT Scan at 3:30am and we didn't hear anything until about 11. We met with the oncologist and the conversation was very positive! There were three diagnoses they gave for what it could be. The one that they are pretty sure what it is is muscle cancer which is the most common type of this cancer they see. He was very optomistic about the outcome of what the course of action would be.
Right now, they are doing a bone marrow test to see if the cancer has spread to the bones. One of the tests will have results immediately and the other result will come back within 48 hours. They do not see any other tumors in the body besides this one, so that is very positive! It also is not in his lungs or his heart cavities so that is great too!
They do hope to at least get the chemo started on Friday. They are saying to expect for them to stay here for a minimum of a few weeks if not longer in the oncology department. As soon as I get the room number/address I will send that out.
It's still a little waiting game but seems like the answers will be back in a few days. But the news we have gotten has been the best we could have gotten so far, so that's great!! Spirits are better from the meeting with the oncologists and the doctors have so far been fantastic and very knowledgeable.
Thanks for all your prayers, thoughts and messages. I have passed all along to Chris and Leslie (it's keeping us busy transcribing them back and forth and helping keep the spirits up and laughter going. I joked I should start an album of some of the convo's going back and forth :-) )
Thanks to all of you! I will keep updating...
I'm sending out an update on Aiden's status for Leslie and Chris because many of you have asked how is doing and they are not/will not be responding/checking emails, phone calls or texts.
Aiden had his surgery this afternoon and the news that came back was a little more than what was expected. The doctors went in and found that the fluid in his lungs was not fluid related to pneumonia but was in fact blood. When they went in further to determine what the cause of it was, they found a tumor in the diaphram. Half the tumor came out and from the look of it, the doctors said it was malignant. They sent it to be biopsied for an actual confirmation of this, but as of now that is the information they gave us. He has been moved to the PICU and is in stable condition. He was in stable condition the whole time during the surgery. After the surgery he was in good spirits and was acting like fun loving Aiden.
We are hoping that they will be able to get him in for a CT Scan tonight to determine if there are any more tumors and to basically get more information. As of now, it is a waiting game. Last check on him, he was sleeping and looks peaceful. We are all hoping for some good results that there are no more tumors. Where it goes from here, we don't know.
We will let you know as soon as we hear any more news. As of now, the hospital is not allowing visitors, but we will let you know as soon as they change this. If you have any questions or concerns you would like me to pass on to Chris and Leslie, please direct them to me here at email@example.com as they are not checking/responding to emails, answer phone calls or texts, etc.
Please keep all of them in our prayers as we wait to hear more.
Thank you!Kere Knapp
Chris and I want to let you all know that we had to take Aiden to Fair Oaks Hospital yesterday afternoon. As many of you may know, the entire household has been sick with a pretty bad bug. Chris came down with cold-like symptoms two Thursdays ago and then Aiden started coughing that weekend. Last Tuesday vomiting ensued so we took him into the doctors early Wednesday morning. The nurse actually swabbed him for strep (even though strep is quite rare in babies) and the test ended up coming back positive. The doctor put him on antibiotics and told Chris and I to make appointments with our primary care physicians. Chris was diagnosed with strep later that day, but my test came back negative.
This past Sunday I noticed that Aiden was breathing rapidly. He didn't display any other signs of illness, though - no fever, no vomiting, a pretty dry cough. I counted the amount of breaths he took in a minute’s time and realized that his respiratory rate was over 70 (it should be around 40). We took him to the hospital for evaluation. At Fair Oaks he was given an IV, a chest x-ray and nebulizer. The ER doc said that the x-ray was abnormal (he has more than just a "touch of pneumonia") so he ordered transport to Fairfax Hospital. The ambulance took Aiden and I a few hours later.
Inova Fairfax Hospital for Children has been amazing, which is such a relief given the already overwhelming and emotionally draining situation. We have met with a pediatrician, radiologist, pediatric pulmonologist, infectious disease physician and pediatric surgeon. All of these doctors have helped us understand what is happening. Aiden's x-ray was very hazy on his right side, which means that fluid is present. Later we had an ultrasound to help better determine the consistency of the fluid. Since ultrasound does not give a 3D picture and the findings were suspicious, our team of physicians have decided to move forward with surgery. The pediatric surgeon is going to place a chest tube to drain the fluid and clean any debris. She will then insert a tiny camera to look around. Since Aiden has not presented with any traditional signs of pneumonia other than an elevated respiratory rate, we need to make sure that there is not an underlying condition causing this illness. There is also a worry that this may be necrotizing pneumonia, which involves the actual tissue of the lung itself. The surgeon will address these concerns during the exploratory portion of the surgery.
Despite all that is happening, Aiden has been in very good spirits. He is smiling, laughing and enjoying all of the attention!! Chris and I feel truly blessed to have such a wonderful support network and appreciate all of the help, well-wishes, and prayers that we have already received. Our little man is quite the trooper and helps keep his mommy and daddy grounded. We love you all and will do our best to relay updates.
Please keep Aiden in your prayers.
All our love,
Leslie and Chris