As many parents know, staying home to care for a child is a full time job. Your work day does not end at five o’clock and you do not get time and a half for working nights and weekends. However, if you are able to do it, even for a short while, you will instantly realize that it is the most rewarding position of your life. Caring for a child with special needs is just as fulfilling but involves a meticulous level of attention, caution and diligence. It is hard not to second guess yourself on a regular basis and, since perfection is unattainable, the reality of fallibility often rears its nasty head at the most inopportune times. I have recently come to realize, that all I can do for, and all I can offer, my sweet baby boy is my very, very best.
The past few weeks involved the nuptials of my best friend, a nice break from treatment, introductions of new chemo agents, a lot of tummy upset and an anemia scare. Chris, Aiden and I continue to take the good with the bad. Truly it is not that hard to do since each happy moment invigorates the fight in us all. Plus, the good gives us hope and, these days, that is all we really need.
* * *Congratulations Mr. and Mrs. Rizzo!On July 3rd, my dear friends Lisa and Jason tied the knot. Lisa and I grew up together and formed a strong relationship over the past fourteen years. Lisa asked me to be her Matron of Honor and I graciously accepted. I was also lucky enough to meet her husband Jason through Chris several years ago. Jason and I even graduated from George Mason University’s School of Management together. For all of these reasons, I never thought that a situation would arise potentially preventing me from attending their wedding.
As the date drew near, my heart began to ache. Since Aiden’s diagnosis I had not left his side. His condition had the ability to change very quickly and I was petrified of leaving him. The diagnosis was still so new and the sting of it all had not yet dissipated. Lisa and I had many conversations about the topic; Lisa relentlessly tried to convince me that it was okay to miss her big day. I told her that I wanted to at least attend the ceremony as long as Aiden was doing well. Fortunately, on the first Saturday in July, I was able to do just that; as part of the wedding party, along with a church full of happy guests, I was able to watch my best friend say “I do.”
Photo by Kate TrianoDuring the ceremony a prayer was said for Aiden. Though Lisa prepared me for this, the gesture still touched my heart and I could not stave off my emotion. Thank you so much, Lisa and Jason!
Lisa and Aiden back in March before his diagnosisIn addition to the constant support that Lisa and Jason provide us on a daily basis, they somehow found the time to plan an AMAZING event for Aiden. Aiden’s Auction will be held on July 31st at the National Conference Center in Lansdowne. I will post a more detailed entry about this event very soon which will include a list of items up for auction. Please stay posted and in the mean time, visit www.aidensauction.com and Aiden’s Prayer Circle for more details.
A Treatment Free Week that is not Free of Stomach UpsetAiden enjoyed his first week off a couple weeks ago. Since receiving the good response to therapy news that I mentioned in my last post, it was so nice to have a chemo-free week to celebrate. Since Aiden’s immune system is still compromised, and he is such a little guy we are not able to visit with other young children, party with large groups, go to the public pool, or even take a stroll through the mall. When Aiden is all better we plan to make up for this with dozens of play dates, family vacations and parties to celebrate his recovery. We did not let this stop us from having fun, though! Aiden got a brand new Jeep Liberty Walker which he loves to take on rides around the kitchen. He also got to enjoy extra playtime with Grandma and Grandpa Tobin and got a visit from Grandma Terry. It is just so nice to evade all treatment-related side effects even for just a short time.
Though a week off is nice, it is not vacation. A week sans chemo is often necessary for count recovery. Aiden’s counts were okay, but definitely on the low side which may have contributed to a little bug he caught towards the end of the week. That Friday he got very sick and since we are all living with my parents now, it was their first time to experience such an occurrence, which proved quite unsettling. We were very close to leaving for the hospital, but fortunately Aiden’s body responded to the anti-nausea pill I held under his tongue. Usually when Aiden gets sick to his stomach we give him liquid Zofran using an oral syringe. More often than not, it is too much for his sensitive little stomach; any medicine that makes it down ends up coming right back up again offering little relief, if any at all. During our last hospital stay, we were introduced to Zofran tabs which dissolve in the mouth. This has been such a help and has definitely contributed to a decrease in visits to the ER due to vomit-induced dehydration.
New Round of Chemotherapy, Neutropenia at Home & Anemia ScareLast Monday Aiden started his new chemo regime. He received Vincristine, Cyclophosphamide and the new chemo agent, Doxorubicin. Aiden gets Vincristine frequently but has not had Cyclophosphamide since he was in the hospital. Cyclophosphamide was one of the first chemotherapies that Aiden ever received. It is a potent medicine and almost always causes patients to become neutropenic (patients are characterized by an abnormally low number of neutrophils, a type of white blood cell which helps fight infection). Patients are also likely to have low red blood cell (hemoglobin and platelet) counts as well. Patients suffering from low red counts can get transfusions, but white blood cell transfusions are not available. To help lessen the severity and length of neutropenia, Neupogen shots can be administered. Last Tuesday, I was trained to give Aiden these shots. He had a small IV cannulae with an injection port (tube that can be inserted into the body, often for the delivery or removal of fluid) inserted in his leg so that I can easily give him shots through this specialized port. This will help reduce the pain of daily injections while also reducing the infection risk associated with multiple needle pricks. Aiden can still feel the medicine going into his leg so the process is definitely a two-man-job.
Seven days after this round of chemotherapy Aiden became neutropenic. All of his counts were low when he was tested at the clinic the following Monday. Neutropenia can last ten days so we are all doing what we can to follow all neutropenic precautions to help keep him safe. Such precautions include, but are not limited to the following:
- Wash hands frequently
- Do not get cuts, punctures or scratches on the skin
- Avoid people who have a cold or flu
- Do not visit crowed areas
- Avoid anyone who has received a live vaccination in the past three weeks
- Do not eat raw vegetable and fruit or undercooked meat (does not yet apply to the little guy as he prefers milk these days)
- Do not have fresh flowers in house or hospital room
Since Aiden is so young, the period of neutropenia is quite stressful. It is hard to tell if his crying is teething related, due to pain, or if he is starting to feel bad. Babies with cancer present quite a challenge. Any temperature over 100.4 has to be reported immediately to Children’s National Medical Center. IV antibiotics and fluids need to be administered within an hour to make sure the infection does not enter his blood stream. Should the situation warrant, an ambulance ride may be necessary to get him to the hospital in an adequate amount of time. For these reasons, we have to really limit visitors. It is just better to play it safe; we are not willing to take chances with his health. Many of us carry germs without even presenting symptoms. We again want to thank everyone for understanding that we have to reduce Aiden’s exposure to germs. When Aiden is done with chemo he will be making multiple visits to meet all of his amazing supporters!
In addition to Aiden entering neutropenia, he also started to get sick to his stomach. This past Monday Aiden received his routine Vincristine push at the clinic. He has many rounds of Vincristine under his belt and fortunately he has not shown any discernible side effects thus far. (I am knocking on wood right now and keeping my fingers-crossed that this encouraging response continues.) Strangely though, Saturday through Thursday he got sick once a day. Chris and I were thoroughly relieved by the brevity of each incident, but were somewhat perplexed as to the cause.
On Wednesday I made the decision to take him to the clinic for assessment. Aiden was extremely pale and lethargic. I was becoming increasingly fearful that we were beginning to see the onset of anemia. Soon after his arrival, I was told that I won the “mommy award” for the day because I did the right thing be bringing him in. Given the situation, though, I wish that I was wrong. His hemoglobin counts had gone down since his blood was last drawn just a few days earlier. The situation was not yet an emergent one, but he definitely would need a transfusion first thing in the morning as we had already missed the last courier run from the blood bank. Aiden was quickly given IV fluids to make him more comfortable.
He slept most of the drive home, but things started to regress from that point on. Aiden was extremely irritable and uncharacteristically upset for much of the night. My mother and I stayed up with him all night long trying to offer comfort whenever possible. Aiden would take brief restless naps (most likely brought on by complete exhaustion) but he would wake screaming. I did place a call to the on-call physician but was told that we should wait until morning to bring him in since he was not febrile. I was tired, frustrated and worried that Aiden needed urgent care. When we presented for the blood transfusion, Aiden was still out of sorts and once again, my fears we affirmed; his hemoglobin had dropped further. Once the transfusion began, Aiden started to settle down. After about an hour, he slept peacefully in my arms and did not wake until the transfusion was complete two hours later.
Aiden looked so much better after receiving blood; the color again returned to his once pallid cheeks. Teething seems to be the only issue currently at hand. Aiden’s poor gums are bothering him to the point where he does not even want to eat. We are using teething toys, cold washing cloths and Tylenol, if necessary. It is scary to give a neutropenic child a fever-reducing medicine though. Temperature is our only barometer to assess infection and we do not want to do anything to mask that extremely important symptom. At the same time, though, I do not want pain from chemotherapy or teething to make my sweet boy feel lousier than he already does. We are looking forward to the commencement of this neutropenic period and hope that a tooth or two may grant us an appearance very soon.
Return to Inova Fairfax Hospital for Inpatient ChemotherapyNext week Aiden is scheduled for two new chemotherapy agents, Ifosfamide and Etoposide. Ifosfamide is extremely difficult on the bladder so he will have to receive IV fluids almost 24 hours a day and a full day following the last day of treatment. In addition to fluids, MENSA will be administered to help further protect his tiny bladder. For these reasons, Aiden will have to be continuously monitored at the hospital.
We plan to report to the Children’s Outpatient Clinic early Monday morning so that he can get his blood drawn. Aiden’s ANC (absolute neutrophil count) will have to be over 750 in order for him to even receive chemotherapy. As long as his white and red blood cells look okay, we will then report to the HEM/ONC floor at Inova Fairfax Hospital for Children. Aiden will be admitted for a minimum of six days and I plan to stay with him all next week.
* * *The past few weeks have been trying at times, but Aiden never ceases to amaze me. Even when he is at his lowest, he is able to offer up a little grin or two. Not to mention he will probably start crawling any day now. Currently he likes to roll himself to his most desired locations, but I can see the frustration in his eyes when his favorite toy is just out of reach. It makes me so happy that he is keeping up pretty well with all of his developmental milestones. He definitely is a fighter and set on beating cancer.
Thank you all for continuing to read this blog and offering such heartfelt words of support, donations, dinners and baby items. Chris and I feel so blessed each and every day. I truly hope to one day be able to thank each and every one of you personally. I am very behind in returning emails, phone calls, texts, Facebook messages and letters. Please know that we truly appreciate all that everyone has done; we think about it all the time.
To all of my dear girlfriends, I promise to take you all up on a dinner out, coffee or simple conversation. Hopefully when the move is complete, we are all unpacked and Aiden is doing well, Chris and I will all have some more time to relax. As always, thank you for your continued understanding, support and compassion.
Please continue to pray for my brave little boy.
All my love,
Leslie
Aiden vs. Solid Foods - Take 1, 2, 3...
